Faith & Salvation

Faith & Salvation

Roby Baird’s Journey

“I’m going through the toughest time of my life. My tumor is back, and it is cancer. This time I am going where God is leading me. Therefore, I am going to worry about nothing  and pray about everything. I know God will take care of me. God has a plan for me.” ~ Roby Baird 8/30/18

At home, in the back yard. An emotional moment of words spoken. Saint Augustine, FL, 8/30/18

I know many people that have a strong faith in God, but I must say Mr. Roby Baird is quite unique, someone special; his faith is definitely on a higher level. I think he would make a wonderful minister or youth leader. I know for some people that the talk of religion is uncomfortable. I’m also fully aware whether you are religious or non religious, or of a different belief system, that it doesn’t make you any more or any less of a good person.

As a person of faith myself, the way I see it is that anyone can go to church, or anyone can work in a church, but that doesn’t mean that they have full faith or deep understanding of what it is like to be a believer in Jesus. There are those that after the church doors swing closed,  “followers” go back out into the world picking up where they left off; being hypocritical, judgmental, uncompassionate, and lacking empathy for others. It’s called ‘Talk without action.’ I have seen it. So, please don’t be turned away by the talk of religion.

Religion is important to this story because this is Roby’s story. He wants to share his journey, and in Roby’s heart, his faith is as much a critical component to conquering his cancer, as is his choice in cancer treatment.

Tattoo, ‘By His Grace’, Saint Augustine, FL, 8/30/18

So, for anyone who is not religious, religious, or is of a different belief, I hope you will be inspired by the journey that Roby is about to take. Because this is not just a story about him battling brain cancer, it’s an inspirational story about his faith in a higher being. I believe we are all brothers and sisters, so my hope is you all will take this journey with him. Universal love and support is what he needs, as well as compassion and understanding for his choices in going through a holistic approach to heal himself.

In 2104 Roby had undergone surgery on the left side of his brain for a benign tumor that was the size of a walnut. ( original story here). In March of 2018, Roby began having those similar warnings that he was all too familiar with; he was having recurring headaches, dizzy spells, and feeling completely worn out. Roby went in for an MRI. The MRI showed a “blip” as he calls it, where the last tumor had been. The size of the newest “blip” measured 8 by 9 millimeters in size. The hope was that perhaps it was scar tissue.

But, in June the symptoms became more frequent, and he began having trouble getting out of bed without falling over.

On June 16th, Roby had another MRI, and it revealed the “blip” had grown, showing to be 14 by 15 millimeters in size. Another, more invasive MRI was performed. These results confirmed he now had a grade 3, malignant astrocytoma. Though the new astrocytoma is smaller in size than the one in 2014, (about the size of a piece of corn), it is cancer.

On August 1, 2018, Roby’s tumor was removed.

Roby’s physicians wanted to begin chemo and radiation immediately after, but Roby has opted out of that option. He has been researching the benefits of going the holistic approach for years, since the time his ex-wife had been diagnosed with Hodgkin's Lymphoma. It was then that Roby saw firsthand the medicinal, healing benefits the cannabis plant could have. With all that Roby has researched, with firm conviction, he feels confident in his decision, and believes strongly that God is with him every step of the way.

Roby arrived in California on September 6th to seek treatment at Green Bridge Medical in Santa Monica. When Roby decided that Green Bridge Medical is where he wanted to go, he began researching for a place to reside during his time there.  He decided that it was worth traveling up the coast to Redding, CA., to be near a church he has long wanted to attend; Bethal Church. The distance between Santa Monica and Redding is a long 10 hour drive, but being that medical marijuana is legal in the state of California, Roby is able to have his medication mailed to him. Being this is the most difficult time of his life, and so far away from his family and friends, he wants to be able to worship and spend his time building his relationship with God at a place he has long desired to be. He went on to say, “Happiness comes from circumstances and when you go through good times in your life you tend to be happy. But, when we go through trials and painful times in our lives, happiness is usually not there.  And, the beautiful aspect of having an intimate relationship with Jesus is that He brings joy.” Roby feels he has been lead to the right place at the right time.

Roby met with Dr. Allan Frankel on September, 7th for his consultation, and on Monday, September 9th, Roby began his first dose of treatment on Tuesday, September 18th at 6pm. He is on what is called the “Quad Regimen”, 5 mg of Delta 9 THC, 5mg of CBD, 5 mg THC - A, and 5mg of CBD -A.

Note: Roby is in California to receive full plant extract because it is not legal in the state of Florida.

I spoke to Roby today,  Roby feels the reason he has been having painful episodes such as headaches, gastrointestinal issues, muscle spasms that occur first in individual parts of the body, then spread out through his body creating whole body spasms. Roby believes this is because the cannabis is doing its work, and healing his body.

So, our story will continue, as Roby will  update us from time to time. I personally feel blessed to have Roby as a dear friend, and humbled that he is allowing me to share with you all this most important time in his life.

“Weeping may endure for a night, but joy cometh in the morning.” Psalms 30:5, Roby recited.

I could feel those words. I could feel them for him, and I feel they are good, reassuring words for anyone going through trials and tribulations.

The sun will shine in the morning.

~ Jennifer Kaczmarek

Roby Baird, Saint Augustine, FL., 8/30/18

Helpers of Roby started a Go Fund me page to help him with his living expenses and treatment expenses until he is able to work again. If you would like to donate, you may do so here






Giving Tuesday 2016

We hope if you are considering giving to an organization this year, that you will think of us. Know that no matter how big or how small, we greatly appreciate your kind gesture in assuring your belief in our mission. Your donation to Taking Focus, INC. is tax deductible, and will go to help further our future efforts. We are an organization that cares about those who live in our communities, and believe that through imagery we can bring people together through empathy, education, and understanding. This is a group that works really hard to make a difference for others.

Thank you!

The Taking Focus Team

 

 

 

 

 

2016 Highlights: A Year In Review

 

Dear Friends and Supporters,

2016 has left us with many things for which we are thankful. Hard work and dedication towards making an impact on the lives of those we document shined through in the work that we highlighted this year. And, whether we all agree or disagree on the political or social issues that were heard, I am grateful that we have built a safe haven for these stories to be told. On every end of an issue there is someone longing to be understood.

For myself, WEED: The Story of Charlotte's Tangled Web, my work that focuses on those who are desperately in need of medical marijuana, the journey has been most humbling.  Amendment 2 passing in Florida for those that are undoubtedly suffering, has been hard to put into words. I am just proud to stand along-side the many individuals who have worked so hard fighting for this basic, human rights cause.

I would like to greatly thank the following publications for featuring this work, and helping me educate the public in the final days prior to the election. My goal was to have all ten of my families featured in a publication, and that goal was achieved. I would not have been able to reach so many individuals without all of their support. If you have not yet seen the articles, the links are posted below. I would like to give a huge thank you to Pierre Tristam of FlaglerLive for granting me the honor of writing the column for the paper.

Also, thank you to VISURA for allowing me to take over their Instagram account leading up to election day. And, to the Southeast Center of Photographic Studies for inviting me to speak at their alumni panel discussion event.

 

FlagerLive

Daytona News Journal (Front Page)

Artborne Magazine

Saint Augustine's The Record (Front Page)

(Slide through the images)

 

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At Taking Focus, we are very proud of our first year, Fiscal Sponsorship selected photographers. Teresa Meier's, Photosynthesis (now transitioning into Light Box Laboratories) had a very successful year. The program she developed, teaching photography as a form of therapy for under privileged, at risk teens, launched because of her dedication and determination to achieve what she had envisioned. Teresa had great community response, one of which resulted in a large donation given by the international advertising agency, Wienden+Kennedy. Their generous donation enabled Teresa to purchase six Nikon DSLR camera's for her students.  Local Portland, Oregon companies; Collage Art Supply and Pushdot Studios, made in-kind donations for the materials needed for her end of the program, celebratory, student exhibition that was kindly held and supported by the respected Newspace Center for Photography.

 Photosynthesis

Photosynthesis

In 2017, we welcome Teresa as she continues on with our Fiscal Sponsorship Program, and as she wishes to move forward developing Light Box Laboratories. To read more in detail about her program that took place this past summer, please go to Light Box Laboratories website below.

Photosynthesis A Light Box Labratories Project

                                                                                                                 

Our second photographer, Jonathan DeCamps has been dedicated to his story from day one. Having come to us with Ghosts In America, Jonathan has been working tirelessly capturing and exhibiting portraits of undocumented immigrants. This is a project near and dear to his heart. Living in Miami, having migrated to the states from his homeland of Perú,  Jonathan can relate to those he photographs. He uses his camera to show his subjects accomplishments and fears, while cleverly shielding their faces, painted in Dia de los Muertos (Day of the Dead tradition- representing death and rebirth) in these staged portraits. Please continue to follow Jonathan in his advocacy, as we will too. We are grateful to have worked with such a passionate and talented photographer this year.

Jonathan De Camps Visual Arts

 Ghosts In America

Ghosts In America

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Tomorrow Is Giving Tuesday!

Tuesday, November 29, 2016, is #givingtuesday. Please consider donating to Taking Focus, INC. Your tax deductible donation will go to help further our future efforts. We are an organization that cares about those who live in our communities, and believe that through imagery we can bring people together through empathy, education, and understanding.

 

 

 

Branden: F.I.R.E.S.

The Petro Family is one that I have been looking forward to meeting for some time. Renee Petro and I became friends and have been communicating by telephone and online, but we had yet to meet in person. Finally, Renee and I met when I drove to Tampa for the Canammom's first local chapter meeting. Renee is the co-founder of Cannamoms. Cannamoms recently was approved for their 501c3 status. These group of women/mother's are very excited about the opportunity of moving forward with their goals. Their mission is to provide awareness and education about obtaining access to medical cannabis for critically or chronically ill, medically-complex, and special needs children. And, I can attest to how tirelessly they all have been working towards getting the vital word spread about voting Yes on Amendment 2 this election.

  Renee Petro seen giving Branden a natural alternative, but wishing she had the option to give her son what she believes he needs; cannabis oil with higher THC., Tampa, FL .

Renee Petro seen giving Branden a natural alternative, but wishing she had the option to give her son what she believes he needs; cannabis oil with higher THC., Tampa, FL.

On to Branden...

Later that evening I had the most wonderful first encounter with Branden. Not to cause to much excitement to Branden, Renee tried to sneak me in through the garage, but Branden was quick to know something was going on. He greeted me in the garage. He asked me my name.

  Portrait of Branden at home. Tampa, FL    

Portrait of Branden at home. Tampa, FL

 

"Jennifer," I said.

He gave me a hug, and while looking up at me he said, "Jennifer." 

My heart melted a bit at that moment. "Yes, my name is Jennifer. Aren't you so sweet." 

Branden, then put his finger on my nose ring, and said, "What is that, a pimple?"

I laughed so hard. I could tell he was being funny. I said, "No, it's a nose ring."

"A nose ring, oh," he said. Then he pointed to it again and said the same thing. And we would both laugh. He would go on to ask me the same question periodically while I was there, just for a good giggle. Despite all the challenges that Branden is dealing with, he is still smart, charming, and very funny.

Branden Petro is 14 years old and suffers from a very rare condition named F.I.R.E.S., that stands for Febrile infection-related epilepsy syndrome. This condition is extremely rare, effecting 1 in 1,000,000. According to his mom Renne, there may be a couple hundred known cases by now. Not so long ago, there were only 35 known cases worldwide. A few months back there was an article about a little boy in Chicago that stated there were 100 known worldwide, but Branden's mom, Renee, says there are probably a couple hundred. She says the support group she belongs to has over 100 cases reported. There might even be more, but there could have been many prior cases not reported because doctors miss diagnosed, not knowing what F.I.R.E.S is. One thing is for sure, and that is that there is not enough information and no cure.  One common thread does exist between all known cases, and that is the onset. All the stories of these cases occur in very similar manners.  On the F.I.R.E.S. Children website there is a clear description, "Febrile infection-related epilepsy syndrome (FIRES) is a form of epilepsy that attacks children three to fifteen years old. It affects boys more often than girls.  A healthy child that has been ill in the last few days with a lingering fever goes into a state of continuous seizures (status). "At first tests show nothing wrong with the brain. Doctors often think it is encephalitis, but the pressure in the brain comes back normal. Children are often put into a coma to calm the seizures. FIRES is resistant to medications and treatments. Barbiturates and cooling may be helpful in the status stage. The seizures are non-focal (different starting points), making surgery useless."

  Branden experiencing a short outburst while sitting at the table. Tampa, FL.    

Branden experiencing a short outburst while sitting at the table. Tampa, FL.

 

 Renee in the early morning, sitting outside of Branden's room. Above Renee on the yellow sheet of paper, is a list of things for Branden to remember to do in the morning; wash his face, get dressed, take his meds, brush his teeth, and to write his name, address, and phone number. Tampa, FL.         

Renee in the early morning, sitting outside of Branden's room. Above Renee on the yellow sheet of paper, is a list of things for Branden to remember to do in the morning; wash his face, get dressed, take his meds, brush his teeth, and to write his name, address, and phone number. Tampa, FL.

 

 

 


"These seizures damage one's cognitive abilities in the brain, and in turn, effecting ones memory and sensory abilities. This can result in learning disabilities, behavioral disorders, physical challenges and possibly death. These children continue to have seizures throughout their lives, and are prescribed toxic medications to help with the frequency of their seizures."

Life as they had known changed for the Petro family in the summer of 2010, when Branden was eight years old. While visiting Renee's family in Israel, Branden went to his mom complaining that his neck was sore. She noticed he had a fever. The doctor assumed it was a virus and put Branden on antibiotics. Renee noticed over the next several days that Branden was not acting like his normal self, and her mother's instincts were right. On the 17th of July, Branden walked into the kitchen after taking a nap, and started talking to his mom. Within moments, he stopped speaking mid sentence. "His face washed over with a look of confusion, and his body arched forward and he started convulsing. I remember how my heart pounded in my chest as I knelt down to hold my child. He was having a seizure right before me, and I didn't know what to do to help him. I just held him to me hoping the seizure would pass, but it didn't."

They rushed him to the hospital. Branden was put through hours of testing, but the seizures would not stop. The doctors could not figure out what was happening. They had never experienced a case such as his. The doctors came to the conclusion that it must have been a virus. Perhaps, encephalitis (swelling of the brain.) "All I kept thinking was that my son was going to die, and I couldn't do anything to help him."

Branden was airlifted to a hospital in Germany to, hopefully, find help and answers. With the relentless seizures continuing, Branden was put into induced coma. He was fed various medications, including anti-epileptic medications. Branden then developed pneumonia and a high temperature of 105.

When Branden was finally lifted from a coma, he awoke seizing and hallucinating. Finally, after many tests were conducted, doctors came to the conclusion that his condition was F.I.R.E.S.

 

Video produced by Leafly, featuring Renee Petro)

The road that has followed since 2010 has been extremely difficult. The only solution the medical field has had to offer is to bounce from one pharmaceutical drug to another. None, of which have resulted in ending the suffering to his body and mind, and not remotely bringing her son back to the boy he once was. The same be told for everyone else I have shown and written about, and for all the stories that will follow because there hasn't been an end-all-cure for them. Instead, the pharmaceutical drugs have been harmful. Case in point with Branden; the side-effects produce hallucinations and cause suicidal thoughts.

Why does Renee fight for Cannabis for medicine? She fights for it because she took it upon herself to do the research. When no one else is looking for solutions to help you and your child who is suffering, as a mother you don't give up, or should I say- "You should never give up."

Renee knows you don't stop fighting. She sees Branden's suffering everyday. And, there are no options; watch the suffering or wait for death to come knocking on the door.

Once Renee discovered the medical benefits of cannabis, and how others were being saved from it, she began fighting for the cause. In 2014, Renee and Branden were also on the same sponsored trip to California that Annelise and Christina Clark, Jacel Delgadillo and Bruno Stillo. and Mariaha and Dahlia Barnhart were on. ( You may refer back to the stories I have covered on Christina Clark.) That is when under professional care, Branden was able to try cannabis. The results confirmed for Renee that cannabis was the answer to the possibility of gaining her son Branden back.

But, since that trip to California it has been a long road in the waiting game. "Unfortunately due to the state laws and political games our legislators would rather us illegally heal our children instead of legally healing our children."

Renee goes on to say, "This is a human rights issue and our rights have been violated far too long."

Renee also says, "The seizures aren't the problem the pharmaceuticals are, and if cannabis can give someone the chance to the best quality of life, then we intend to make that happen, and will do so one way or another."

  In Branden's room he has a large collection of trophies. Before life had changed at the age of eight, Branden played soccer. During the years family and friends continue to gift Branden with a trophies to remind him how special he is., Tampa, FL.

In Branden's room he has a large collection of trophies. Before life had changed at the age of eight, Branden played soccer. During the years family and friends continue to gift Branden with a trophies to remind him how special he is., Tampa, FL.

TODAY

Branden was the first patient in his physicians practice to be recommended for the long awaited high CBD/ low THC, granted by the Compassionate Care Act of 2014, and he was the fifth-tenth person to be registered in the state of Florida. Their purchase was finally made on August 30, 2016; in a vape pen. 

It has been no surprise to Renee that the treatment has not been working; "Amendment 2 needs to pass, CBD isn't enough."

  Renee with her son Branden sitting together in the early morning, outside his bedroom, talking about the day ahead. Tampa, FL.    

Renee with her son Branden sitting together in the early morning, outside his bedroom, talking about the day ahead. Tampa, FL.

 

FINAL THOUGHTS

As many of you start heading out to vote, I hope these stories are making an impact on you.

All I can say, is please vote yes on 2.

 

For more information about F.I.R.E.S. go to: http://www.rarefires.com

For up to date information please follow us on Facebook at :

        Taking Focus, INC.

 

 

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

 

 

 

Open Talk On Medical Marijuana

Copy of Copy of Copy of Copy of Copy of Thursday, September 1, 2016 (1).jpg

OPEN TO THE PUBLIC TALK, thanks to Donna DeMeglio who is hosting this event through her Nurturing Living Circle Series. Education is key, and this election is too important to the thousands of those who are truly suffering here in Florida. Come listen to two highly educated individuals on the subject; Dr. Purvin Shah, and, mother of Christina Clark who is with the organization, Cannamoms. Limited Space Available. Please RSVP quickly by text or message to: 386-569-4433. Event: Thursday, September 1, 2016. Change Jar Books, 319 N. Moody Blvd., Flagler Beach, FL 32136

Help White Rabbit Laboratories Become a 501(c)3 Non-profit

Below is a letter from Teresa Meier. Here she explains how her desire to help underprivileged youth came to be. We are very proud of her accomplishments this past year, and for her determination to see her vision come to fruition. Please consider continuing to support her as she takes her next big step. Let's encourage the success of those who wish to help others!

I was a fearful child. Quiet, because I was afraid to speak. I watched, afraid to act. I lived under tables, afraid to take up space. And I colored. I silently replicated the world onto scraps of paper, making a mark and allowing myself to exist and be a part of the world around me. My tiny self intuitively understood this was my way of holding a dialogue with the world. It didn't scare me. That is, until this world told me it should. Artists are starving and coloring is for kids, anyways.

So I studied neuropsychology. I spent my early adulthood studying and researching the crossover area between genetics and psychology. Much of the research I did centered around victims and language, which led to working with children and teens. When I encountered a six-year-old child sex offender, I began to grasp the incredible perpetuity of the cycle of violence and sadly understood how the greatest victims are unknowingly set to repeat. It took me many more years, but I ultimately discovered that art and photography are my most powerful tools in combating that violence for myself and for others.

Becoming a photographer and artist has been one of the most challenging and rewarding tasks in my life. I am constantly surprised, amazed and delighted by photography's power to engage and unite people in a positive way. I am grateful that I have photography in my life, for the way it has and continues to connect me to so many people and communities, and I hope to continue to share it as a powerful, positive and impactful tool.

For the past three years, I have collaborated with prevention specialist Laura Stanley of Trillium Family Services to organize and teach a photography-based art therapy class for at-risk and underprivileged teens under the name of Photosynthesis. Last June, we provided a weeklong photography workshop at David Douglas High School.

A recent and generous donation from Wieden+Kennedy enabled the purchase of six Nikon dSLR cameras for the program, and the kids enjoyed learning camera basics during an outdoor expedition to Wahclella Falls in the Columbia Gorge. We also enjoyed a guest lecture from photojournalist Joel Preston Smith, who taught the kids about environmental portraiture. Joel accompanied us on a service tour at Zenger Farms, where we were able to practice photographing people engaged in projects on the farm, as well as learn about the farm and lend a hand with some weeding.

(click through slides above)

Additionally, I taught the kids about the historical photographic processes, and with a kind donation from Collage Art Supply, the kids were able to try out the cyanotype process. Finally, Pushdot Studios generously printed and mounted the students' work for a month long exhibition in July at Newspace Center for Photography's special exhibitions gallery.

The program has garnered tremendous community support, and I have witnessed the positive impact it has had on participating teens. Because of the success of this pilot program and with the continued support of this wonderful community, I have decided to officially establish the Photosynthesis program under the name White Rabbit Laboratories. I will continue the efforts of Photosynthesis and build a sustainable photography program that will not only provide valuable therapeutic benefits to its participants, but will also result in a more diverse media landscape in a field that it is still predominantly comprised of white males from the middle to upper class.

It is my goal to raise enough funds via my sponsorship with Taking Focus, Inc to establish White Rabbit Laboratories as 501(c)3 non-profit. Additionally, I am seeking funds to support administration, marketing and education developments for the program as I expand the organization and attempt to integrate the program beyond the three high schools I have currently served.

Thank you,

Teresa Meier

Become A Sponsor: "Ghosts In America" - NY Exhibition

Dear Friends, 

Jonathan DeCamps, New York exhibition Ghosts In America: Portraits of Undocumented Immigrants, will take place on July 9, 2016 at Rio Penthouse Gallery. "Your donations will be used for covering the costs of production of these portraits that will help the community spread awareness about immigration and the importance of voting. As wells as the real stories behind those that this issue affects," says DeCamps. In order to meet this goal, he is seeking donations and sponsorships from local businesses and individuals.

"By giving to this event you'll be supporting the Ghosts In America project in helping us provide assistance to those in our community by spreading their stories and journeys, " says DeCamps.

Donations will be recognized at the event. As an image sponsor, your name or business will be placed on the wall recognizing your contribution. And, your name or business (with a link to your website if available), will be stated on the Taking Focus website, as well as any accompanying materials promoting the event.

Please consider donating or becoming a sponsor to support Jonathan DeCamps . If you have any questions or concerns, please feel free to contact us at: info@takingfocus.org

Listed below are the sizes and the amount if you would like to become a sponsor:

12x18 There are 9 images up for sponsorship. Each image is $200.00 for individuals / $300.00 for businesses

24x36 There are 5 images up for sponsorship. Each image is $300.00 for individuals / $400.00 for businesses

40x60 There is 1 image for sponsorship at $500.00

*Please remember that all donations, big or small, make such a difference.

Jonathan, "With this exhibition right around the corner, I hope that you will consider donating or sponsoring to support our advancement in bringing attention to a cause that is deeply meaningful to many."

All donations are tax deductible through Taking Focus, INC. Donations may be made online through  http://www.takingfocus.org/donate/  or a check may be mailed and payable to : Taking Focus, INC. P.O. Box 351025, Palm Coast, FL 32135

Bruno: Dravet Syndrome

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

Dravet Syndrome is a rare genetic epileptic encephalopathy(dysfunction of the brain). It begins in the first year of life in an otherwise healthy infant. Prior to 1989, this syndrome was known as epilepsy with polymorphic seizures, polymorphic epilepsy in infancy (PMEI) or severe myoclonic epilepsy in infancy (SMEI). The disease begins in infancy but is lifelong.  (via the Epilepsy Foundation, read on for more information)

February 8, 2016 - This visit with Bruno took an unexpected turn, and this experience shed even more light into the unpredictable life that Jacel and Bruno lead. I know that there are hundreds, if not thousands of other families that can relate to their story. The numbers are baffling and the stories are heartbreaking;  there are so many suffering day in and day out from debilitating illnesses. In the past week alone I personally know of three children that have ended up in ICU.  These families live in fear not knowing what each day will be like for their child.

I met Jacel over at B & V Thera-Pro Associates, in Miami, FL., where Bruno receives therapy. This is his home away from home you could say. He has three different types of therapies, each for one hour, three times a week.

It's wonderful to see this smile on his face. Remember, this is a little guy who is four years old and can not speak. Every tiny task he manages is seen as overwhelming success. He is pictured here in his new chair/stand that he has recently received, it enables him to be in a standing position without assistance.

When Bruno was finished with therapy, Jacel took him to get his hair trimmed. Bruno left with a nice little fade on his head. We decided next time he should have a couple thin lines shaved on the side. He would look really cute with that.

I had a little scary moment after we went to grab something to eat. Jacel needed to run into a store, and I waited in the car with Bruno.  I was sitting talking to him and shooting pictures with my phone, when all of a sudden he started seizing. I can say that an overwhelming rush of panic went through my body. While I have seen him seize many times, I have never been alone with him when it has happened. I wasn't sure what to do. And, being unsure of how long Jacel might be, and not knowing how long the seizure would last, the moment was nerve racking. "What do I do? " I was envisioning myself picking him up and running to find her, but I wasn't sure exactly where she was. Just as I was about to get out of the car, I saw Jacel coming around the back of the car, and I thought, "Thank God!


February 9, 2016 - On this day, we met with Dr. Ian Miller at Miami Children's Hospital. He is Bruno's neurologist. This was to be just a routine visit for Bruno. Dr. Miller was just following up with Jacel on how Bruno was doing. Bruno has been fortunate to have been selected for a CBD trial being conducted at the hospital. I can only imagine how many other parents would wish to have their child be included in such a fantastic study such as this.

Jacel says, "He was on the blind study the first four months, some days were stable, and some days were hard. It was hard to tell." Meaning that she is not sure if he was receiving a placebo at the time, or if it was the actual CBD.

 

 

After the first four months of unknowing, he then began truly receiving CBD in September of 2015.

Note: When I first met Bruno in August of 2014, he was having over 300 seizures a day. Then he went to Colorado and California by November of 2014 and started on Jayden's Juice, Charlotte's Web, and other cannabis oil such as THC oil, to help hen big seizures were present. Bruno then had a sudden decrease in seizures, he was down to 50 a day. "During our use with cannabis we prevented the use of rescue drugs, as cannabis replaced them with little side effects compared to the rescue drugs used, such as Diazepam and Klonopin. Imagine if he was on CBD and THC combined legally here in the state of Florida where he would receive the correct dosage of THC oil that he needs instead of harmful pharmaceutical recue drugs to treat his major seizures!"

In March of 2015, Bruno stopped cannabis all together, and was stable. Months later he started the trial.

 

 

After meeting with Dr. Miller, Bruno was to follow up on other tests.  We preceded on to having his routine blood work done. Unfortunately, it was something Jacel was going to have to go back to have done the following day because they were having difficulty getting enough blood drawn from him.

 

 

From here we moved on to our next location, Bruno was to have an EKG test. Once we got upstairs, Jacel and I noticed that Bruno started not to seem himself.  As you can see in this image, a change has now started to occur. He began having long dazes. He wasn't himself at all. Usually he's arms and legs are waving. He was completely still, and began to be unresponsive. You can see the concern on Jacel's face.

After Bruno's EKG we sat in the waiting room right outside for a little while to see if he would snap out of it. Bruno was feeling warm. This fever would soon come to be a sign of what was yet to come. Jacel began giving him some medication, but nothing changed. We decided it was best to go back to Dr. Miller.

 

Once we arrived to Dr. Miller's office, Bruno began having seizures. These seizures were different and not so noticeable to the eye as other seizures he has had, except for his hands, they were shaking as the seizures were happening. After trying a few emergency medications that seemed to have had no effect on him, Dr. Miller suggested we head to the emergency room. He notified them we were coming, and when we arrived another seizure insued. The nurse took Bruno from Jacel's arms into hers, and rushed with him down the hall, around the corner, into the trauma center.   

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Within seconds, there was one after another entering the room attending to Bruno. It was a pretty intense time, so I don't remember how many doctors and nurses were attending to him.  Never did I think that our day would have come to this.

But, this is a true indication of what life is like for the suffering and their families. They live never knowing what their day will bring. 

That night Bruno was submitted into the ICU. During the night his fever spiked and he had four seizures, bringing his oxygen level down to 1%.

 

This image represents all the children that are suffering.

Bruno was finally released from Miami Children's Hospital on Feburary 11, 2016.  What they discovered was that he had contracted Coronavirus, which can be equivalent to a common cold. The nonconvulsive seizures, and spiked fevers were all indications of the cold he had contracted. This goes to show how delicate the bodies are of these children. Can you imagine all of these things happening, and seeing your child turn blue and go to having 1% oxygen?

I would like to thank Dr. Miller and the entire staff that I met that day at Miami Children's Hospital. Everyone I encountered was so kind.

Please I encourage everyone seeing this to please share with your family and friends. Spread the word. The road the suffering and their families are trudging is beyond difficult.

I am committed to sharing these stories in hopes that hearts are being reached. People are not only suffering, they are dying; children are dying. These stories are more common than you would think. We can't sweep them under the carpet anymore. Everyone deserves the chance to try every option available that may be able to not only ease their suffering, but to save their life.

Educate, Advocate, have Empathy, Compassion, and Love.

#dotherightthing #fightthegoodfight #makingpicturesmatter

#WEEDthestoryofcharlottestangledweb

~ Jennifer Kaczmarek

 

Anneliese Clark: TED Talk :To What Lengths Would You Go to Save Your Child?

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

We now have a copy of Anneliese's moving TED Talk. Here she shares with you her journey with Christina, and the vital information that is not widely known to the public. Educating oneself and sharing that knowledge with others is key and necessary to create change. Please consider sharing, November is not far away! Everyday matters to thousands of people who are suffering. It is time to unite, to push, and to believe that together we can change the system.

(Please click the video twice, it will direct you to You Tube to view it.)

Behind The Scenes 1-13-2016

 Best Friends: They've been through the thick together and are as tight as ever. Studio D, Southeast Center for Photographic Studies, Daytona Beach, FL, 1/13/16

Best Friends: They've been through the thick together and are as tight as ever. Studio D, Southeast Center for Photographic Studies, Daytona Beach, FL, 1/13/16

I am leaping into the new year continuing on with my projects, but still keeping this one under wraps. In time I will be able to unveil, but for now this is what I am able to share. I am grateful for our day.

~Jennifer

Notes To Self

  • Stay focused
  • Keep pushing boundaries
  • NEVER lose sight of the importance of the work

#makingpicturesmatter

" Iam only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do."                                                                                 `Edward Everett Hale

 

 

Ringing In The New Year With Much Gratitude For 2015

To all of our supporters,

 

As this year comes to a close, we would like to give our utmost appreciation and thanks to  those who have supported us along the way. Without your financial support and belief in our mission, we could not exist. We are deeply indebted to all of you. Thank you!

This year Taking Focus made extraordinary strides in bringing awareness to important social issues that our occurring not only in our world, but in our backyards as well.. From the beginning our goal has been to allow other photographers and filmmakers to be able to pursue their projects that in turn would have an impact on our society. This year that goal became a reality when we held our first submission selection. Jonathan DeCamps, “Ghosts In America” and Teresa Meiers’s, “Photosynthesis”, we feel, are two amazing projects that will have true impact on the lives they touch. Catch up on our blog to learn more about them, and consider donating to further their succes.

The other profound event which took place this year was my invitation to be a part of the Orlando Museum of Art’s, Florida Art Prize in Contemporary Art. This was an exhibition of ten selected artist throughout the state of Florida that the OMA felt exemplified artists that are moving forward in the contemporary art world and making an impact with their work. Being the first and only photographer selected, it was quite an honor. This opportunity was another indication that helped solidify my purpose for creating this organization. I want to thank OMA for showing images from this controversial subject, “Weed: The Story of Charlotte’s Tangled Web”, because here in the state of Florida, we are at a critical time.  We need people to be educated on the subject.

Please consider continuing your support; we are making great strides and need your support more than ever. We are excited for 2016!

Wishing everyone a Happy New Year!

Best to all,

 

Jennifer Kaczmarek / Founder                                                                              and entire Taking Focus Team

A VERY SPECIAL THANK YOU TO ALL OF OUR SUPPORTERS AND SPONSORS FOR THIS YEAR'S OMA EXHIBITION!

 Joe Vance for his support, assistance, and friendship                                                                                                                                                  Adriana Teresa Gragham of VISURA for her extended edit of Love For Alyssa                                                                                                              Mr. Steve Kelly                                                                                                                                                                                                                The Southeast Center for Photographic Studies                                                                                                                                                            Reg Garner and Triangle Reprographics for their beautiful large scale prints of Love For Alyssa, Keep The Light On, and WEED: The Story of  Charlotte's Tangled Web                                                                                                                                                                                           Piedmont Plastics                                                                                                                                                                                                      Robert E. Schroeder                                                                                                                                                                                                       Dennis Bayer                                                                                                                                                                                                          Orlando Museum of Art's entire staff                                                                                                                                                                                           

        

IMAGE SPONSORS FOR WEED: THE STORY OF CHARLOTTE'S TANGLED WEB:

 Mr. and Mrs. Josh Guberman                                                                                                                                                                                        Mr. and Mrs. Lance Barton                                                                                                                                                                                                 Mr. and Mrs. Thomas Kaczmarek                                                                                                                                                                            Martinez Consulting Firm, INC

IMAGE SPONSORS FOR LOVE FOR ALYSSA (2012)

Art & Soul                                                                                                                                                                                                                         Mrs. Barbara Brooke                                                                                                                                                                                                       The Bower Family                                                                                                                                                                                                         Mrs. Barbara Brooke                                                                                                                                                                                                       Ms. Sharon Caprice                                                                                                                                                                                                       Mr. and Mrs. Chris Dunham                                                                                                                                                                                               Mr. Josh Guberman                                                                                                                                                                                                       Mr. Larry Kaczmarek                                                                                                                                                                                                     Mr. and Mrs. Thomas Kaczmarek                                                                                                                                                                                   Ms. Gina Kirkpatrick                                                                                                                                                                                                         The Kuiper -Santure Family                                                                                                                                                                                             Netpique, LLC                                                                                                                                                                                                                   Mr. and Mrs. Emilio Martinez                                                                                                                                                                                       The Sacks Family                                                                                                                                                                                                          Mrs. Mavis York                                                                                                                                                                                                                 Mrs. Rebecca Woerner  

ADDITIONAL THANKS AND SUPPORT 

Frame of Mind                                                                                                                                                                                                                                                                

                                                                                                                                                                                          


"Ghosts In America" in NYC

In November, I had the pleasure of going back to New York City to attend a fundraising gala for the Latino Justice.  At the gala nine of my portraits from my series, "Ghosts In America" were on display.

It was a very exciting evening.

I had the opportunity to meet with interesting people - advocates for social justice and those who have a hard time living in the New York and New Jersey area.  Among the invitees, I was able to meet with writer Junot Diaz who was being honored by Latino Justice with their Community Champion Award.

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I was also interviewed by Univision's local news about "Ghosts In America" during my visit.

Six of the nine portraits sold at the silent auction and the proceeds went to Latino Justice's fundraising. The buyers where very excited and everyone was happy with the work.

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During my time in NYC I managed to schedule an exhibition during the month of June at the Rio Penthouse Gallery in Uptown Manhattan. The exhibition opening will be June 3rd, 2016. For this exhibition I have a goal of producing more work in another US city. To make this happen I need your support. Any donations towards "Ghosts In America" are tax deductible. "Ghosts In America" will also be part of Uptown Arts Stroll 2016 during the month of June 2016.

Donate

UPDATES

Jorge Tume, above, has been shown on the back of the buses around Miami Dade and gained some local notoriety. He recently told me that he has gained a visa that will let him go visit his native Perú for the first time in 20 years. He is also finishing college and keeps being active promoting voting registration activities.


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Rosana, above, has kept herself active struggling for immigration reform. Rosana made a pilgrimage from South Florida to Washington DC to meet with the Pope during his last visit.


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Ceci, above, moved to New Mexico and is teaching, besides keeping up with her poetry writing.

Giving Tuesday

{All images on this post are the exclusive property of Jennifer Kaczmarek , Teresa Meier, and Jonathan DeCamps, and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek, Teresa Meir, and Jonathan DeCamps}


December 1st is here! All around the globe we are celebrating 'Giving Tuesday'. It is a day of celebration and giving to an organization you believe in. This has been a year to be proud of as we have made great strides in accomplishing our mission of educating and advocating for those in need. There are such important stories to be told, and each story we tell has a common goal of reaching the masses; opening our hearts and minds; to humanize us and connect us, and to make us a more compassionate world. Believe in us as we believe in you!

There are four different ways you can donate to us today. You can choose to support one of the following three projects, or give to Taking Focus, Inc., and your donation will go to assisting in our operational costs.

Thank you all so much for your support and belief in us,

Jennifer Kaczmarek / Founder

#makingpicturesmatter

 

 

*We are a 501c3 organization, all donations are tax deductible. After your donation please follow up with a little note that states which cause you have just donated to, so that we can make sure your donation is rightfully placed. 

~Thank you!

donations@takingfocus.org


GHOSTS  IN AMERICA

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PHOTOSYNTHESIS

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WEED: CHARLOTTE"S TANGLED WEB

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Donate

2015 Fiscal Sponsorship Program Selection

We at Taking Focus, Inc. are excited to announce the selection for our 2015 Fiscal Sponsorship Program.

Our decision came down to not one, but two exemplary projects that follow with our mission.  After speaking with them both, we were very impressed with their passion and their drive. These are two photographers using their art in a creative manner to drive change for the greater good of society in two very different ways.

For Taking Focus, we are thrilled to be able to showcase two projects that exemplify the diversity that we can support as a 501(c)3 organization.

We are looking forward to working with these two photographers and their photographic projects to bring forward awareness and change. We believe that these two projects will become even more impactful with the support of our Fiscal Sponsorship Program and more importantly, the support from donors to see the full realization of their projects.

Without further delay, these are two the applicants we are pleased to present:

Jonathan De Camps - Ghosts in America

Ghosts in America is an ongoing project capturing the societal dissonance of ordinary working people in the United States who live among us as undocumented immigrants. They are mothers, fathers and students, small business owners, teachers and activists -- each working towards a better life for themselves and their families.

Officially, undocumented immigrants don't exist. Ghosts in America tells the stories of their lives amidst the struggles of uncertain immigration status. Subjects’ faces are painted with cultural symbols from the Día de los Muertos (Day of the Dead) tradition, which represent death and rebirth. Each subject is transformed into a character in their own world and is photographed in their home environment, where they nurture their own dreams and goals.

BIOGRAPHY:

Jonathan De Camps was born in San Juan, Puerto Rico to Dominican parents in November 1983. He was raised in the Dominican Republic and brought up with the rich culture and beautiful scenery of the Caribbean.

A lifelong interest in narrative imagery in films, paintings and photography led him to pursue a Bachelor of Arts in Advertisement in 2008. In 2009, he moved to South Florida to broaden his horizons in the visual arts. In 2013, he earned an MFA in Visual Arts from the Miami International University of Art and Design.

 

AND

 

Teresa Meier - Photosynthesis

Photosynthesis is a therapeutic photography group for underprivileged and at-risk teens, run by prevention specialist Laura Stanley and photographer Teresa Meier. The course takes place at Newspace Center for Photography and is designed to provide the opportunity for self-exploration and self-expression through photography and the opportunity to engage in a project designed to enhance community well-being.

Participants are given the opportunity to learn from local artists during scheduled guest lectures and are granted access to the facilities at Newspace Center for Photography, where the course concludes with a one- month exhibition of the students’ best work.

BIOGRAPHY:

Teresa Meier is a fine art photographer based in Oregon.

Currently, Teresa is finishing an MFA in photography from the Academy of Art University. Teresa volunteers her time teaching photography to at-risk and underprivileged youth in the Portland community and firmly believes that photography changes lives.


Taking Focus INC.'s Call For Submissions

{All images on this post are the exclusive property of Jennifer Kaczmarek and are protected under the United States and International Copyright laws. The images may not be reproduced, copied, transmitted or manipulated without the written permission of Jennifer Kaczmarek. Use of any image as the basis for another photographic concept or illustration (digital, artist rendering or alike) is a violation of the United States and International Copyright laws. All images are copyrighted @2016 Jennifer Kaczmarek}

CALL FOR SUBMISSIONS:

Taking Focus, Inc. is welcoming proposals of still and video project funding via our fiscal sponsorship program.

Deadline Extension: 11:59 pm on September 30th, 2015

 

THESE ARE THE BENEFITS:

  • You will work under an umbrella of like-minded photographers and filmmakers who want to see change and help those who need it

  • We will help make a proper edit of the visual work for submission to grant applications

  • We will look over your grant material for your project

  • You will have use of our tax EIN to apply for government grants after being selected

  • Your project’s private donors or corporations will receive a tax deduction

  • Your project has the potential to raise subsequent funds for the subjects of your work

  • Your project will help educate others

  • The work is yours; you retain all copyrights

 

How does this work?

Our fiscal sponsorship program gives you, the photographer or videographer, the opportunity to raise funds for your project by allowing your supporters to donate under the umbrella of Taking Focus, Inc.’s 501c3 status; these will be tax deductible donations for your supporters.

What is the outcome?

A final part of the proposed project must include a giving back component. Taking Focus, Inc. was created to assist other important social and health related projects. Our main mission remains, creating change by impacting the human spirit. For example, the giving back component could be an exhibition of the final work that educates the general public or a specific group; the giving back component could also be a fundraiser for the subject(s) of the project or a US-based organization for a related cause.

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Submission details: A two page proposal is required. The first page must be an overview and intentions for the project. The second page must be a breakdown of the intended budget.

For video proposals, a 2 to 3 minute video of the work or prior work that shows your visual literacy. Please include a link to the video on a sharing platform such as Vimeo or your personal website.

For stills projects, 10 to 15 jpeg images sized to 1000 pixels wide on the shortest side. There should be no borders or watermarks and titled with your name and the number of the image (ex: yourname_01.jpg). Please include your full name, website and image captions within the body of the email. Or send a link to a body of work on your personal website that represents your vision, with captions, for this project proposal.

By all means, spread the word to other photographers that are looking for a way to manifest their projects into reality. If you are a photographer who is trying to make a difference through your work. Then let's start the conversation.

Email us at - submissions@takingfocus.org


#makingpicturesmatter - Taking Focus, Inc.

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