Dr. Milbert Brown

Jerry and I had the pleasure of having a wonderful video chat with our Taking Focus BIPOC Grant recipient, Dr. Milbert Brown. It was so heartwarming to hear how grateful he genuinely is about the opportunity to move forth with producing new work. Dr. Brown expressed how excited and inspired he is, as he shared with us the many ideas he has for his body of work. “I can just see the images in my mind”, he said.

Just Us: The Black Experience in America, A Visual Study of Imagery from the 21st Century has been his life’s work. He sees this as part of the final chapter to his photographic legacy.

Please continue to stay with us as we take this monumentous journey with Dr. Brown.

Thank you,

Jennifer

2023 TF BIPOC Grant Winner

Congratulations to Dr. Milbert Brown whose work Just Us: The Black Experience in America, A Visual Study of Imagery from the 21st Century has been selected by Carl Juste to be the 2023 BIPOC Grant recipient. Stay tuned for a more in-depth look into Dr. Milton’s work and proposal for the Taking Focus grant.

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Racial Injustice

Taking Focus will soon announce the open date for submissions for our next $2,500 grant and all the details about the grant. Check back soon!

2020 Taking Focus BIPOC Grant Fundraiser

NOTE: As of July 20th - we have reached 60% of our goal. Please consider donating today. Down below you may donate to either our Facebook Campaign or here through our Taking Focus Website. Thank you!

Family, Friends, and Colleagues,

This year, with COVID-19, and the vast unemployment we felt guilty to ask others for donations, and were going to pass on this year’s grant. But, with many tragic BIPOC deaths, we could not sit idly back and do nothing. We are hoping to make this year’s grant a reality. The goal for this grant is to seek out a photographer who is focused on racial injustice within their community.

Like you, we feel the time is imminent for racial injustice change to begin. And while the momentum is high and the world is in the fighting spirit, we want to help be a part of the change in some way.  We know that things will not change overnight. We can all recognize that we need a kinder world. For this to begin we need to be more open to listening and learning, without holding prejudice, and evolve more as human beings.

Taking Focus was founded on the very principle of shedding light on unjust issues, with both our image-making and storytelling. We want to feed a photographer’s hunger and drive to see.

We are hoping as a community you can help grant a photographer the resources they need to make impactful work about racial injustice; a photographer who is interested in using their work to make a difference. Their idea may be large scale or may have a single focus within their immediate surroundings.  

As a photographer, creating personal work that you feel is important can be incredibly hard to fund. We feel this issue is so important to have a light continued to be shined upon. We hope that you will help make this year’s grant a reality for someone who wants to do good.

We want to be very transparent with you. As a grant funder you should know the stipulations of this grant and what will be required of the recipient. A portion of the grant will be to help fund the creation of the project; whether it is for equipment, food, hotel, etc. The other portion of the grant will be for what we call, “The Giving Back Component”. 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; “The Giving Back Component” could be a community outreach effort to educate the general public. Think out-of-the-box, the possibilities are endless.

As always being a small grassroots organization we are coming to you to help and join us. We ask you to help us make this a reality. This is something for both Taking Focus and you to be a part of. We continue to have faith in humanity and know that the issue is about human progress. We believe that as a collective group we can always make a difference.

We are asking you to donate today, so we can fund a photographer that will continue to bring forth the wake up call America needs. We are asking you to donate today, so a photographer can shed light upon racial injustice. We are asking you to donate today, so a photographer can educate their community through “The Giving Back Component”.

In 2019 we awarded Rory Doyle the first grant from Taking Focus for $2,500 for his project ‘Delta Hill Riders’ focusing on the black cowboys of Mississippi. Rory’s project was ultimately selected by Mike Davis, a world renowned photo editor who runs the Alexia Grant competition and is a professor of visual storytelling at Syracuse University. Rory used his portion of “The Giving Back Component” to team up with a few wonderful organizations that support enriching the lives of the youth in their communities: 

Rosedale Freedom Project organization whose mission is to support the Delta Mississippi young leaders in the development of critical consciousness and practice of justice through community building, exploration, artistic creation, organizing, and the study of social history and grassroots democracy.

Spring Initiative organization whose mission is to empower young people in the Mississippi Delta to beat the odds, access the opportunities they deserve and build successful, happy and hopeful lives for themselves.

F-L-Y (Forever Lifting Youth) Zone is a community awareness movement based in Cleveland, Mississippi. 

This opportunity led all of the youth from these different initiatives to attend an event hosted by the Ark-La-Miss Rodeo in Greenville, Mississippi. At this event, they were given the chance to see local cowboys show off their horses, hear about their history, ride the horses, and learn more about Rory’s work, experiences, and reasons for documenting their story.

Thank you for your time and we hope to see your support of this year’s Taking Focus Grant.

““Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.” – Martin Luther King, Letter from a Birmingham Jail, April 16, 1963.”

• All donations are tax deductible.

• To send a check or money order, please make them payable to Taking Focus, Inc. and mail to: Taking Focus, Inc., P.O. Box 351025, Palm Coast, FL 32135

A YEAR ENDING AND NEW YEAR BEGINNING

Rory Doyle - Delta Hill Riders

A YEAR ENDING AND NEW YEAR BEGINNING

At Taking Focus, we leave 2019 behind feeling very grateful. And, we look ahead to 2020 with much excitement of what’s to come.  We never take for granted the big or small milestones we cross-over because we are aware that every little step is a step in the right direction. 

We are grateful for the success of our first Taking Focus Grant. We would like to send a huge thank you to our judge, Mike Davis for taking this first walk with us. We also are eternally grateful to our underwriters who made this grant possible; Charleen and Kenny Sacks. And, lastly to our recipient Rory Doyle. We not only are grateful for his commitment and dedication to fulfilling the requirements of our requests but, for applying for the grant. Rory understood what we were about. He looked at this grant as a way of not only receiving funds to help further pursue his work, but he was also intrigued by the conditions stated in the grant. He wanted to do more for the community that he was documenting, and our grant helped give him the opportunity to start fulfilling that longing.

Rory used his work, Delta Hill Riders to help educate all of us on a part of our history that had gone untalked about. He also had a strong desire to help educate the youth about the black cowboys. He used his giving back component funds to team up with a few wonderful organizations that support enriching the lives of the youth in their communities:

Rosedale Freedom Project organization whose mission is to support the Delta Mississippi young leaders in the development of critical consciousness and practice of justice through community building, exploration, artistic creation, organizing, and the study of social history and grassroots democracy.

Spring Initiative organization whose mission is to empower young people in the Mississippi Delta to beat the odds access the opportunities they deserve and build successful, happy and hopeful lives for themselves.

F-L-Y (Forever Lifting Youth) Zone is a community awareness movement based in Cleveland, Mississippi.

This opportunity lead all of the youth from these different initiatives to attend an event hosted by the Ark-La-Miss Rodeo in Greenville, Mississippi. At this event, they were given the chance to see local cowboys show off their horses, hear about their history, ride the horses, and learn more about Rory’s work, experiences, and reasons for documenting their story.

As we roll into the new year we are excited about what’s to come and the new opportunities that may arise. You never know what is around the corner.

Please continue to check in on us and see where we are ‘taking focus.’ 

Sincerely,

Jennifer Kaczmarek  / Founder & the Taking Focus Team

Career Updates with Rory Doyle

It’s been a busy few months since receiving the Taking Focus grant in March!

There’s been a number of big moments — including winning the 16th Smithsonian Photo Contest, followed by the $25k Southern Prize from South Arts, and the 2019 Zeiss Photography Award. I was juried into the 2019 Obscura Festival of Photography in Penang, Malaysia in mid-August. The theme for this year's festival is "Subculture," and the judges felt my Delta Hill Riders project was a great match. I’ll be heading to Penang and can’t wait to share these Mississippi stories on the other side of the world.

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One of the best things to come out of this project is the close relationships I’ve formed with the people in the photographs. There’s an elder cowboy in town named Rogers Beamon. From the very beginning, he has been very supportive of my documentary work, and he’s proud to share his cowboy history. Please send good vibes and prayers his way, as he’s recovering from two recent strokes. I went to visit him at home last week after getting home from weeks of rehab in a senior home. He’s dreaming of getting back on the saddle.

Reflection - Rory Doyle In His Own Words

Words By : Rory Doyle

Earlier this month, I received an exciting phone call notifying me that I received the 2019 Taking Focus Grant. As you can imagine, I was immediately ecstatic!

As a freelance photographer in the rural Mississippi Delta, funding for project work is crucial. Grant assistance in remote America is so critical at this time, particularly when it seems like support for the arts continues to dwindle.

The funding will go a long way in helping me continue my ongoing documentary project on African American cowboys and cowgirls in the Mississippi Delta — a subculture that has long been overlooked.

I was extremely interested in applying to the grant when I read the main elements of Taking Focus’s mission — to present stories that will impact communities; to build a better understanding of social and human rights issues; and to educate and advocate for those who do not have an equal platform to voice themselves.

The main feature of the grant that peaked my interest was the “giving back” component, where a portion of the funding will be given directly to cowboys and cowgirls photographed in my project. I’ve been extremely fortunate to publish the work in a number of outlets and multiple exhibitions — and now, through the giving back component, the grant will allow the riders to receive a contribution and have a platform to share their stories.

In my proposal, I outlined an educational outreach program where the cowboys/cowgirls would visit local K-8 schools in my county. The riders will bring their horses and talk to students about black cowboy history and local riding history. Students will be tasked with the assignment to talk to their parents/guardians and research their family’s ties to cowboy culture. I’ll collect their findings, and thus have new contacts to photograph and interview for historical context.

As previously mentioned, I’ve been blessed with the opportunity to share this body of work in a number of ways. The work was first shown at the Half King Photo Series in New York in June 2018, along with a concurrent show in Harlem. Washington Post then shared the project online, which led to more publicity from ABC News, Yahoo, PDN, The Guardian and more. The project was also supported with grants from the Mississippi Arts Commission, National Endowment for the Arts, and the Mississippi Humanities Council. Additionally, I received a first-place prize at the 2018 Eye Em awards in the journalism category.

The first full exhibit of the project was unveiled Feb. 19, 2019 in Cleveland, Mississippi (where I’m based) at the Delta Arts Alliance. Opening night for the exhibition was a career highlight for me, as the gallery was so crowded that people couldn’t fit in the building. Cowboys and cowgirls came out in large numbers and they were given the opportunity to speak about their passion. In addition, a lecture on black cowboy history was provided by a professor from the local university. The crowd was diverse, and I left with great pride seeing how the event brought the community together. It’s a night I’ll never forget.

Just a few days after opening night in Mississippi, my wife and I were extremely fortunate to travel to London and launch a separate exhibit at The Print Space Gallery on Feb. 28. It was another experience we will cherish — travelling across the pond to continue sharing these unique stories. Much like the first exhibit, the venue was packed and the crowd was diverse. Being able to share the work is a huge honor, but to see people overcoming some common racial barriers is even more rewarding.

My project will soon undergo a shift thanks to the giving back component. A greater purpose will shape, where the cowboys and cowgirls will have additional opportunities to benefit from the project. I have high aspirations that this will expand the work’s impact in the community, which is a prospect I don’t take lightly.

I’m incredibly grateful to those involved in the grant process who I’ve had the pleasure of interacting with, including judge Mike Davis (who holds the endowed Alexia Chair at Newhouse), Jennifer Kaczmarek (president of Taking Focus), and Jerry Englehart Jr.(stills director at Taking Focus). I am honored to be associated with all of you, and I’m looking forward to the next stages.

2019 Taking Focus Photo Grant Winner - Rory Doyle

Delta Hill Riders by Rory Doyle

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“Rory Doyle’s passion for telling the stories of the Delta Hill Riders is apparent both in his images and in what he intends as a giving back component - to enliven the history of these mythic cowboys by having them tell their stories present and past in the area schools. To connect elders and peers with a new generation in the Delta is admirable in itself. To do so in the service of preserving a little known slice of history is all the more important.

Rory takes us into settings through moment-driven images that are powerful and varied compositionally with a strong use to tonality to convey meaning beyond what is shown. As we pass from setting to setting there’s always a strong sense of place that freezes the nowness of the people in the pictures. - Mike Davis, Judge”

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Project Proposal:

A recent article in Smithsonian estimated that just after the Civil War, one in four cowboys were African American. Yet this population was drastically underrepresented in popular accounts. And it is still. The “cowboy” identity retains a strong presence in many contemporary black communities.

This ongoing documentary project in the Mississippi Delta, “Delta Hill Riders,” sheds light on an overlooked black subculture — one that resists both historical and contemporary stereotypes.

The project began in January 2017 when I attended a black heritage rodeo in Greenville, Mississippi.

The body of work reveals how deep and diverse this community is. I’ve been invited to black heritage rodeos, horse shows, trail rides, “Cowboy Night” at black nightclubs, and subjects’ homes across the Delta.

On a personal level, I've been welcomed by these folks in a way I could not have imagined. And because of that, it’s been the most engaging project I've worked on. It’s a story that's particularly timely with the current political environment, and a renewed focus on rural America.

Delta Hill Riders is a counter-narrative to the often negative portrayal of African Americans. Instead, I have captured a group of riders showing love for their horses and fellow cowboys, while also passing down traditions and historical perspectives among generations.

Ultimately, the project aims to press against my own old archetypes — who could and could not be a cowboy, and what it means to be black in Mississippi — while uplifting the voices of my subjects.

The Taking Focus Grant would go a long way in supporting me as I continue to travel across the 18 counties that make up the Mississippi Delta to work on the project. The story has already had an impact in the community, educating Deltans about a group of riders that have largely been overlooked.

Giving Back Component:

One roadblock I’ve faced throughout this project is an inability to uncover documentation of Delta cowboy culture through the years. Simply put, there is very little documentation of how this population started and how it has changed through generations. My best information comes from oral history accounts. And all the elder riders I’ve spoken with say in the old days, there were way more cowboys.

My proposal with the Giving Back Component is to rely on the local population to gain a stronger historical understanding. I would use the funding to pay elder cowboys/cowgirls to visit local K-8 schools in my county. The riders will bring their horses and talk to students about black cowboy history, and local riding history. Students will be tasked with the assignment to talk to their parents/guardians and find out if their family also has ties to cowboy culture. I’ll collect their findings, and thus have new contacts to interview for historical information.

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We at Taking Focus, Inc. would like to greatly thank Mike Davis for his belief in our organization’s mission. We at Taking Focus Inc. believe that photographers should give back to the communities that they have built a relationship with through their projects. This grant opportunity encouraged Rory Doyle to go above and beyond just documenting what was in front of his camera. By Rory proposing a giving back component that connects generational understanding of the history of the black cowboys in the Mississippi Delta, he recognized how aligning his project goals with our organization’s mission would ultimately give a resilient voice to the community he was documenting. Rory’s proposal to help educate the younger generation about the their connections to an under documented culture is key to leaving a lasting change for the Mississippi Delta as a whole.

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We would like to greatly thank our generous underwriters Charleen and Kenny Sacks for making this year’s grant possible. We are very thankful for their belief in the documentary process and believing in Taking Focus, Inc. to support a project that directly impacts furthering a community through our giving back component.

Taking Focus Photo Grant Extension

Submissions for the Taking Focus Photo Grant have been extended until February 22, 2019, 11:59pm EST.

Read all about our judge Mike Davis, and submission guidelines @ TF submission

We look forward to seeing your extraordinary work!

Best of luck,

The Taking Focus Team

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

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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.

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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

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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)

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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

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

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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.

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

"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.

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.

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.

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

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Open Talk On Medical Marijuana

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