Patient stories are a central theme for the events organized by the Charcot-Marie-Tooth Association (CMTA), Hereditary Neuropathy Foundation (HNF) and others this September as part of the 2018 CMT Awareness Month.
A degenerative neuromuscular condition, CMT, affects one in every 2,500 people. It has no known cure. The goal of this year’s activities is to make every CMT story heard to create awareness about CMT and emphasize the importance of channeling research and development toward finding therapeutic targets for CMT.
The HNF foundation aspires to increase CMT awareness, support patients and promote drug discovery, development and improve CMT diagnosis.
This month, HNF is organizing several events that are providing an avenue for patient stories to be heard by decision-makers in the government, academia and pharmaceutical industries.
The “Externally-led Patient-Focused Drug Development Meeting (PFDD) for Charcot-Marie-Tooth Disease (CMT) and Inherited Neuropathies (IN)” by HNF is an opportunity for patients and caregivers to interact directly with representatives from the National Institutes of Health (NIH), U.S. Food And Drug Administration (FDA), healthcare providers, pharmaceutical companies and payors or sponsors.
This two-day “Voice of the Patient Weekend” will be at the College Park Marriott Hotel and Conference Center in Hyattsville, Maryland, starting Sept. 28. Drug development will be the focus of the talks that day, while behavioral health discussions will take place Sept. 29.
“This opportunity ensures patient perspectives are considered throughout the drug development continuum. We, as patients, are now steering the direction of our futures and have a responsibility to make our voices heard,” Allison Moore, founder and CEO of HNF, said in a press release.
“Providing patients with an opportunity to speak directly to FDA representatives about what it’s really like living with CMT and outlining what patients need in terms of new therapies, is critical to advancing much-needed medical breakthroughs,” said Courtney Hollett, executive director of HNF.
“We are grateful to all the patients who will bravely testify to represent our community,” Hollett added.
Also, HNF is organizing the “Moon Run” as a medium to inform people about revolutionary technologies like anti-gravity treadmills (e.g., Alter-G) that can help people with CMT get back to running. Inspired by a patient’s story, HNF urges people to contribute and run wherever possible — outdoors, in the gym or pools, or on an anti-gravity treadmill.
HNF, in collaboration with the CMT support community and discussion group by Inspire, also provides an online support group for patients to discuss their experiences about living with this chronic illness.
With a vision for “A World Without CMT,” the CMTA works to improve patients’ quality of life, supporting new drug development and finding a cure for this rare, chronic illness. It organizes events throughout the year. For this year’s awareness month, it has started a Twitter campaign – Twibbon – urging patients and caregivers to share their stories using the CMTA’s #Twibbon on their profiles this September.
In addition, CMTA also is organizing “Walk 4 CMT,” a volunteer-led fund-raising event in Palo Alto and Los Angeles, California, Nashville, Tennessee, and Washington, D.C., on Sept. 15. This event is an opportunity for CMT patients to interact raise awareness in the community. Participation information is available here or you can contact CMTA at [email protected] to organize a campaign in your locality.
The funds raised during the walk will support CMTA’s efforts to find treatments and cure for CMT.
The CMT UK is urging everyone to use social media to spread awareness about CMT with the hashtag #cmtaware, distribute flyers and posters, organizing fundraisers, and asking patients to tell their stories. Details for the 2018 story event are here.