CMT Research Foundation

As we welcome the new year, we’re inspired by the progress we’ve made and remain steadfast in our unwavering commitment to finding treatments and cures for Charcot-Marie-Tooth disease. Thanks to your support, we have funded 25 research projects, with 5 preclinical candidates — but we’re not done yet. There’s more work to be done, and more projects to fund in 2025. With your help, we can turn hope into action. Join us in the fight to end CMT. Together, let’s make 2025 a year of hope, progress and breakthroughs. www.cmtrf.org/donate.

The greatest gift Jamal Hill could receive is a cure for CMT. Jamal was diagnosed with CMT 20 years ago, at just 10 years old. Over time, his body has adapted to the condition, making what many would find unimaginable feel like his “new normal.” For Jamal, finding a cure would mean making his dreams of family planning a reality — without the fear of passing CMT on to future generations. It would provide peace of mind, knowing they wouldn’t have to face the same challenges he did. Jamal is always looking ahead. He doesn’t believe his best year is behind him, in fact, he believes his best year is ahead of him. Jamal hopes that he can end 2027 and ring in the new year with a cure for CMT. Would you please consider commemorating Jamal’s favorite future holiday year of 2027 by donating $20.27, $202.70 or even $2,027. Your donation will be DOUBLED so that he can receive his greatest gift of all — a cure for CMT. https://lnkd.in/gmGTXi3E https://lnkd.in/gXK2dKvE

The greatest gift the Viele Family could receive is a cure for CMT. Deanna Viele’s father wasn’t diagnosed with CMT until his 70s, which finally helped explain the symptoms he had faced for years. It was then that Deanna’s parents realized many family members shared similar symptoms but had never received a diagnosis. Sadly, her father passed away just a few years later due to other health issues. Because his diagnosis came so late, he wasn’t able to complete the testing his doctors recommended, leaving unanswered questions about how future generations may be affected. For the Viele family, a cure would mean freedom from worrying about what comes next. 2016 was a special year for the Viele family. Thanksgiving, her father’s favorite holiday, was especially memorable. He cherished sharing a good meal with family, and for him, Thanksgiving was a more meaningful, family-focused holiday. Would you please consider commemorating the Viele family’s favorite holiday year of 2016 by donating $20.16, $201.60 or even $2,016. Your donation will be DOUBLED so that they can receive their greatest gift of all — a cure for CMT. https://lnkd.in/dY8aGe7K

The greatest gift Gary Berg could receive is a cure for CMT. Gary was diagnosed with CMT as a teenager. He noticed symptoms such as neuropathy in his feet that hindered his ability to jump, run and play sports like he once used too. After his family members received their diagnosis, Gary was able to finally have some clarity on why his body wasn't working like it once did. For Gary, the hardest part about having CMT is feeling the inadequacy of things you think you should be able to do. December 1989 was a holiday to remember for Gary. It was the last year he was able to spend time with his entire family and experience the magic of the holidays through his son’s eyes. Would you please consider commemorating Gary’s favorite holiday year of 1989 by donating $19.89, $198.9 or even $1,989. Your donation will be DOUBLED so that he can receive his greatest gift of all — a cure for CMT. Learn more at https://lnkd.in/dY8aGe7K https://lnkd.in/gFtQQv2v

NMD Pharma A/S announced that they have published new clinical and preclinical data that provides evidence that targeting neuromuscular junction deficits could potentially improve muscle function in CMT patients. “We are encouraged by these published results from NMD Pharma, which demonstrate that neuromuscular junction dysfunction is a significant disease characteristic in CMT patients and that targeting neuromuscular junction transmission with NMD Pharma’s drug candidate, NMD670, can restore muscle function in CMT mouse models,” said Dr. Riann Egusquiza, CMTRF Director of Research. “Together, these findings highlight NMD670 as a promising therapeutic option for CMT patients. We eagerly await the results of their ongoing clinical trial evaluating the effectiveness of NMD670 in CMT patients.” Read more: https://lnkd.in/gMSXdDzr

The greatest gift Shayla Bozarth could receive is a cure for CMT. Since childhood, CMT has shaped Shayla’s life. It has gradually affected her hands and feet, causing painful neuropathy, as well as hip dysplasia and scoliosis. Though she once felt ashamed by her CMT, Shayla now embraces her new daily life, which may involve dropping things more often, illegible handwriting or using a scooter to get around. Living with CMT requires creativity and resilience. Shayla carefully plans her tasks, aligning them for when she has energy and the ability to get them done. Despite these challenges, she is deeply grateful for the abilities she retains and for the unwavering support of those around her. The holiday season has always been special for Shayla, but 2020 holds an unforgettable place in her heart. Though the world had shut down, preventing her usual trips to the mountains, her boyfriend of over a year surprised her with a magical evening. He planned a campfire serenaded by a guitarist, followed by a romantic proposal complete with hot chocolate and a carriage ride. It was a moment Shayla will cherish forever. Would you please consider commemorating Shayla’s favorite holiday year of 2020 by donating $20.20, $202.00 or even $2,020. Your donation will be DOUBLED so that she can receive her greatest gift of all — a cure for CMT.. https://lnkd.in/dY8aGe7K

The greatest gift Cleary Simpson could receive is a cure for CMT. From the moment Cleary first heard the words “Charcot-Marie-Tooth” she has been committed to finding treatments and a cure for this disease so her daughter —and others like her —can one day live a life free from this disease. Cleary supports her daughter in her belief that CMT should not define her identity, but encourages and supports her, and all CMT patients, to speak openly about how CMT affects their lives so people can understand the challenges of living with CMT. It is impossible to describe what finding a cure would mean to Cleary, her family, friends, supporters and the CMT community. Eliminating the daily challenges of CMT, and the fears about the future would be the greatest achievement. 2017 was a Christmas to remember for Cleary. Surrounded by family, she celebrated the season creating memories that will be treasured for years to come. Would you please consider commemorating Cleary’s favorite holiday year of 2017 by donating $20.17, $201.70 or even $2,017. Your donation will be DOUBLED so that she can receive her greatest gift of all — a cure for CMT. https://lnkd.in/dY8aGe7K

The greatest gift Grace Brusky could receive is a cure for CMT. Her journey with CMT began in elementary school, where she would experience frequent falls. She spent years wondering what was wrong with her. It has limited her abilities. She sees other kids run while knowing she will never be able to. Since CMT is so rare, it took many years for doctors to even consider it as a possibility, from unanswered calls to misdiagnoses. Living with CMT has been a constant learning process and has shaped her life in ways she never anticipated. Finding a cure for CMT would be life-changing, not only for Grace, but also for future generations. One of Grace’s favorite memories was Christmas 2022. She was surrounded by her loving family, creating unforgettable moments that she will always cherish for the rest of her life. Would you please consider commemorating Grace’s favorite holiday year of 2022 by donating $20.22, $202.20 or even $2,022. Your donation will be DOUBLED so that she can receive her greatest gift of all — a cure for CMT. https://lnkd.in/dY8aGe7K

The greatest gift Allison Taylor could receive is a cure for CMT. For her, CMT isn’t just a diagnosis — it’s a family legacy that spans six generations. She grew up with her mother’s “foot inspections” and the knowledge that CMT might someday be part of her life. At 18, she received her official diagnosis, and since then, her journey has been marked by both determination and daily challenges. CMT affects her mobility in painful ways. Tasks that seem simple come with a physical cost, and she’s had to let go of activities she loved. Rather than letting CMT define her future, she chose to fight back by changing her college major to biology and dedicating herself to researching CMT. Today, as a fourth-year PhD student at Johns Hopkins University, she holds onto hope — not just for herself, but for future generations who might live free from CMT. One of her most cherished holiday memories is from Christmas 2005, when she climbed a ladder with her family to place the star atop the Christmas tree — a hopeful and joyful moment she'll always treasure. Would you please consider commemorating Allison’s favorite holiday year of 2005 by donating $20.05, $200.50 or even $2,005. Your donation will be DOUBLED so that she can receive her greatest gift of all — a cure for CMT. https://lnkd.in/dY8aGe7K https://lnkd.in/gjYFm5z2

The greatest gift Peter J. de Silva could receive is a cure for CMT. Peter’s journey with CMT began when he was a teenager. He was slow to develop physically and found walking and running difficult. By the time Peter was 15, he was in the operating room at Boston’s Children’s Hospital on numerous occasions to create some level of stability in his feet and legs so he could appear as “normal” as possible. Now a father of two daughters — one of whom is also impacted by CMT — Peter is more determined than ever to seek treatments and cures for all affected by this terrible disease. For Peter, stopping the suffering in future generations would be the greatest gift of all. Peter cherishes the holiday season, especially Thanksgiving and Christmas. While these holidays celebrate different traditions, they share common values: faith, family, friends and gratitude for the abundance we have in the world. Family brings people together, and community sustains them. One special holiday for Peter was Christmas 2021, which he spent surrounded by the ones he cherishes most, enjoying the bounty of the season. Would you please consider commemorating Peter’s favorite holiday year of 2021 by donating $20.21, $202.10 or even $2,021. Your donation will be DOUBLED so that he can receive his greatest gift of all — a cure for CMT. https://lnkd.in/dY8aGe7K