Our individual team members have combined digital forces to create this awesome fundraising team. Together we will raise more money for the Myhre Syndrome Foundation than we ever could alone!

Myhre syndrome is an extremely rare genetic disorder, each Myhre warrior is different but common characteristics include hearing loss, stiff joints, short stature, intellectual disability, cardiovascular and respiratory problems that can lead to life-threatening complications. Currently there is no cure.

Presley was diagnosed with Myhre Syndrome in October of 2017 after 3 years of genetic consultations and testing; three years of wondering why our child was different, why she wasn’t developing like a typical toddler.

At the time she was diagnosed, there were only approximately 50 people diagnosed with the syndrome worldwide. The day we received her diagnosis was the day that our lives changed forever. We had to become Presley’s biggest advocates. We had to learn everything we could about this syndrome with very little research materials available, and had teach her numerous medical specialists what Myhre Syndrome was.

Having a child with such a rare progressive disorder is terrifying. We don’t have the answers to so many questions that we have and will never have the answers without research. We’ll never know how long it will be before Presley’s health declines; it could be in a year or 10 years. We don’t know why she’s losing her hearing or why she’s several years delayed developmentally. We will never know what the future holds for Presley or what we can do to prevent years of pain and suffering without the proper research. 

With your help the Myhre Syndrome Foundation can get more answers, fund more research and strive to find a cure to stop the progression of these symptoms.

Thanks so much for your support and please send this page to any friends who you think might be interested in donating!

Want to help?

Support by making a donation to our team. The process is fast, easy, and secure... or come join the squad!