Living with CMT means that Luca Haik begins his day putting on his leg braces and heading to physical therapy so he can get stronger. CMT makes everyday things difficult — his legs often hurt, and he gets very tired.

For Luca, a cure would mean other kids like him could live a life free from the pain of CMT.

Christmas 2023 was special for Luca as he was able to spend time with his family and help his mom put up the Christmas tree. He also enjoyed giving presents to his brothers.

Would you please consider commemorating Luca’s favorite holiday year of 2023 by donating $20.23, $202.30 or even $2,023. Your donation will be DOUBLED so that he can receive his greatest gift of all — a cure for CMT.

December 2023 was a holiday season to remember for Rob Prior, as he spent a final precious holiday with his mom, who had bravely battled CMT for most of her life. Wheelchair-bound for years, she passed away from complications shortly after the season ended. Spending that final holiday together is a memory Rob will cherish for the rest of his life.

For Rob, the hardest part about CMT is watching it slowly take parts of himself and seeing the impact it has on loved ones. A cure would mean a life free from the fear and uncertainty that CMT brings, a chance to build a family without the worry of passing this condition on, and a wonderful way to memorialize his mother.

Would you please consider commemorating Rob’s favorite holiday year of 2023 by donating $20.23, $202.30 or even $2,023. Your donation will be DOUBLED so that he can receive his greatest gift of all — a cure for CMT.

Grace Brusky’s 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.

For Allison Taylor, 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.

Laura MacNeill’s journey with CMT is just beginning. While she always had high arches, loose ankles and a clumsy nature, Laura just assumed it was simply part of her unique style. Recently, however, Laura started noticing significant changes in her balance and weakness on one side of her body. With a family history of CMT — including her father, three uncles and grandmother — Laura has started her diagnostic journey, guided by CMTRF.

Finding a cure would mean everything to Laura. As a parent, she never wants to be the reason why her child faces struggles or challenges. Knowing that this progressive disease currently has no treatment only intensifies her determination to help find a cure — especially for the sake of her children. A cure would not only prevent her children from facing these challenges, but it would also lift the burden from her father, who unknowingly passed down CMT.

1987 was a season to remember for Laura, filled with cherished memories of Christmas morning with her parents. While she now creates magical holiday moments for her own children, she fondly looks back on those mornings and treasures the joy they brought, especially the joy of her dad’s famous Christmas morning French toast.

Would you please consider commemorating Laura’s favorite holiday year of 1987 by donating $19.87, $198.70 or even $1,987. Your donation will be DOUBLED so that she can receive her greatest gift of all — a cure for CMT.

December 1989 was a holiday to remember for Gary Berg. 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.

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.

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.

CMT has been a part of Adam Kauffman’s life since childhood. Running through generations of his family, he grew up with the notion that he was defined by CMT. Because of CMT, Adam had to focus his attention on academics. While in the long run, that turned out to be a blessing, it was very difficult to come to terms with as a kid who just wanted to participate in all activities.

As he got older, he began questioning why anyone should have to live with it, fueling his drive for a cure. For him, a cure would mean freedom for future generations, allowing them to choose their own paths without CMT’s limitations.

Thanksgiving 2012 was a holiday to remember for Adam as it was the first Thanksgiving after his youngest son was born. Surrounded by family, including his mother and mother-in-law who are no longer with him, he cherishes this memory as a time of togetherness and gratitude.

Would you please consider commemorating Adam’s favorite holiday year of 2012 by donating $20.12, $201.20 or even $2,012. Your donation will be DOUBLED so that he can receive his greatest gift of all — a cure for CMT.

From the moment Cleary Simpson 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 this disease.

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 they will treasure 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.

“One in a billion.” That is what Lily Sander’s parents were told when she was diagnosed with an incredibly rare form of CMT — CMT1E with HNPP — at just four years old. Lily immediately underwent a bilateral reconstructive surgery of her feet so she could walk again, followed by extensive physical therapy.

The hardest part of having CMT for Lily is the mental game. While the physical symptoms are debilitating, what is worse for her is the fear of the unknown.

Finding a cure would give Lily her future back. Right now, Lily faces an uncertain road ahead, wondering whether or not she will have to choose a different career path, have a family and be a good mother, and what her body will be able to do in 20 years — which is terrifying.

Christmas 2016 was celebrated in a different way, but one to remember for Lily. Lily, and her extended family went on a cruise. Celebrating the festivities aboard a cruise ship and spending time with her family was one of her fondest memories.

Would you please consider commemorating Lily’s favorite holiday year of 2016 by donating $20.16, $201.60 or even $2,016. Your donation will be DOUBLED so that she can receive her greatest gift of all — a cure for CMT.

Peter De Silva’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.

Since childhood, CMT has shaped Shayla Bozarth’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.

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 worry 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.

As CMTRF’s VP of Philanthropy, Anna Combes has witnessed firsthand how CMT takes a daily toll on patients’ lives — not just physically, but emotionally. Patients and families worry deeply, not only about their own struggles but also about how this disease will impact future generations.

For Anna, a cure would mean achieving the ultimate goal — one that would put her out of a job but change countless lives. “We want to end this disease in our lifetime,” she says, holding onto hope for a future without CMT.

Anna’s favorite holiday memory was Christmas 2006. The first holiday spent back in her home after the devastation of Hurricane Katrina. What made it even more special was being able to watch her son fully embrace the spirit of Christmas.

Would you please consider commemorating Anna’s favorite holiday year of 2006 by donating $20.06, $200.60 or even $2,006. Your donation will be DOUBLED so that she can receive her greatest gift of all — a cure for CMT.

Maximiliano Barrientos’ CMT diagnostic journey was not an easy one. After multiple medical visits and confusion with other conditions, he finally received a diagnosis after three years. After his diagnosis, Maximiliano became actively involved in finding a cure — something he feels very optimistic about. To him, a cure would mean a better quality of life for millions around the world.

Christmas Eve 2021 holds a special place in Maximiliano’s heart as his newborn daughter came home and it was the first Christmas spent with her.

Would you please consider commemorating Maximiliano’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.