Learn about BIO, register for events and explore member services. This year, the foundation is seeking to turn awareness of Charcot-Marie-Tooth (CMT) disease into action through useful and informative videos, personal fundraising pages, and a “double-your-donation” fundraising campaign.. About. Founded by Susan Ruediger and Patrick Livney, who have over 20 years of collective experience working with the CMT research community, the CMT Research Foundation is solely devoted to funding research projects that will deliver a cure or treatment for CMT. Do you know what CMT researchers say is the most powerful and influential force to speed treatments for CMT? Help us make a difference! Research. Attend Events; Advocate; Support; Close; for Patient Organizations. 355 talking about this. Help us bring hope to all these families all over the world. Find out what CMTA is doing to advance research, create awareness, and make life better for everyone affected by CMT. They won't stop until they do so. Your donation WILL make a differece. The CMT Research Foundation (CMTRF) wants to turn September from Awareness Month into “CMT Action Month.”. Inherited mutations in the MFN2 gene lead to degeneration of muscle-controlling … Cognipharma have partnered with the CMT Research Foundation to find treatments and cure for CMT, and are fundraising as a team to deliver on that goal. CMT Research Foundation Personal Fundraising. Christopher “Topher” Delamarter grew up the son of an army brat with a wanderlust for travel and adventure. Please help us get there by donating what you can. Since 2008, STAR has invested more than $16 million in CMT research. Synonyms: CMT 4B1, Charcot-Marie-Tooth disease, Type 4B, CMT 4B, Charcot Marie Tooth disease type 4B1 Charcot-Marie-Tooth disease type 4B2 Synonyms: CMT 4B2, Charcot Marie Tooth disease type 4B2, CHARCOT-MARIE-TOOTH DISEASE, WITH FOCALLY FOLDED MYELIN SHEATHS, AUTOSOMAL RECESSIVE, TYPE 4B2, CHARCOT-MARIE-TOOTH NEUROPATHY, TYPE 4B2 Patients and families. Thank you. … We would like to show you a description here but the site won’t allow us. “The CMT Research Foundation will play a unique role in the CMT community by limiting overhead and focusing on funding research that will help speed cures not only for various levels of CMT, but also other neurological degenerative diseases including amyotrophic lateral sclerosis (ALS) and Alzheimer’s,” Livney said in a press release. September 1 at 5:54 AM. Federal tax exempt status as a public charity under Section 501 (c)(3) is pending by the U.S. Internal Revenue Service. The ongoing hunt for CMT genes has given insights into treatments that might be used to stop or reverse the disorder. CMT4B3 Research Foundation. The Biotechnology Innovation Organization is the world's largest biotech trade association. Find a Patient Organization; Rare Disease Day® Patient Stories; Take Action. Read More. Read More. Today is the first day of our CMT Action Month, a time to rally toge... ther as a CMT community to transform awareness into action. The CMT Research Foundation was created by two patients who have over 20 years of experience advancing CMT research and drug development. CMT Research Foundation Jan 2020 - Present 1 year. Any donation that you make will be matched dollar by dollar by Cognipharma! AcuraStem has identified 37 compounds that improve nerve cell survival and might help treat Charcot-Marie-Tooth disease type 2A (CMT2A), according to a press release from the CMT Research Foundation.. CMT2 accounts for roughly one-third of CMT cases and CMT2A is its most common subtype. Chris Delamarter Topher's Personal Fundraising Page Help us reach this important goal before the end of September! Atlanta, Georgia, United States Founder and CEO Gary Donaldson Communications Sep 2017 - Present 3 years 4 months. While expected to treat multiple CMT … The CMT Research Foundation is solely dedicated to funding research that will yield a cure or treatment for CMT. Information on Clinical Trials and Research Studies; COVID-19 Resources; Help to Access Medications. Federal tax exempt status as a public charity under Section 501 (c)(3) is pending by the U.S. Internal Revenue Service. Our Vision Donate  Hunter’s CMT4B3 Research Foundation Inc. (Tax ID: 85-3259676) is a Delaware corporation. CMT Research Foundation. Hunter’s CMT4B3 Research Foundation Inc. (Tax ID: 85-3259676) is a Delaware corporation. Our Vision Donate  Hunter’s CMT4B3 Research Foundation Inc. (Tax ID: 85-3259676) is a Delaware corporation. CMT Research Foundation funds Shift to explore novel series of drugs created to control the expression of PMP22 gene. 77 Garden Road Scarsdale, NY 10583 info@cmt4b3.org Contact us: (917) 453-2319. The CMT Research Foundation is solely dedicated to funding research that will yield a cure or treatment for CMT. Overland Park: In late January, the CMT Research Foundation announced a partnership with Shift Pharmaceuticals to further research in treatments for CMT1A, a familiar form of Charcot-Marie-Tooth (CMT). 1 Cognipharma Team $23,717.90 raised; 2 Susan Ruediger $12,426.00 raised; 3 Chelsea Layton $1,494.30 raised; 4 Gary Donaldson $1,068.59 raised; 5 Karina Wilgeroth $1,065.00 raised; View Full Leaderboard. Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 organization which mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures. As the CMT gene hunt continues, MDA-funded scientists are investigating how and why specific genetic mutations lead to different types of CMT. The approach focuses on silencing the gene that is causing the disease in each disease subtype, and replacing it with a functional gene. Patient-led research organisations are changing the landscape for rare disease research and drug development one disease at a time and the CMT Research Foundation are no exception. CMT Research Foundation Personal Fundraising Leaderboard. The CMT Research Foundation is ensuring that I will have at least one treatment option within my lifetime. 77 Garden Road Scarsdale, NY 10583 info@cmt4b3.org Contact us: (917) 453-2319. When you give by December 31, 2020, a generous group of donors will match your donation up to $100,000. Born in Washington, D.C., they moved to Brooklyn when he was 7 years old. September is Charcot-Marie-Tooth (CMT) Awareness month and we are delighted to welcome George Simpson, volunteer media relations advisor, as our guest blogger to educate our community on this little … CMT4B3 Research Foundation. They have one single focus: find treatments for CMT with our lifetimes. Edinburgh, United Kingdom Gary Donaldson Communications was founded to offer clients a reliable, forward-thinking and creative partner that will help engage their target audiences and inspire business growth. All donations are tax-deductible to the full extent of the law. Charcot-Marie-Tooth type 1A, or better known as CMT1A, is a … Yes, that means you. Working with a network of respected scientists and industry professionals, the foundation will accelerate treatments and a cure for CMT. About. Launched in 2018 by two CMT patients, Susan Ruediger … You can give Angelique and everyone living with CMT more than hope by making a donation to the CMT Research Foundation to fund the most promising research that’s solely focused on delivering treatments and cures during our lifetime. Currently, the STAR Drug Development Pipeline involves more than 30 research partners in more than 50 research studies. The CMT Research Foundation has launched a new research program that will seek to develop a precision medicine approach to treat people with Charcot-Marie-Tooth (CMT) disease, the foundation announced in a press release. Hereditary Neuropathy Foundation (HNF) is a non-profit 501(c)3 organization which mission is to increase awareness and accurate diagnosis of Charcot-Marie-Tooth (CMT) and related inherited neuropathies, support patients and families with critical information to improve quality of life, and fund research that will lead to treatments and cures. Patient Assistance Programs; Other Financial Assistance ; Connect with Others. Join Membership Network. Federal tax exempt status as a public charity under Section 501 (c)(3) is pending by the U.S. Internal Revenue Service. CMTA Annual Reports The 2019 Annual Report is now available. Help us make a difference! The CMT Research Foundation has one single focus: deliver treatments and cures for CMT. As the CMT Research Foundation is solely dedicated to funding Research that will yield a cure or treatment CMT. At least one treatment option within my lifetime by Cognipharma the approach focuses on silencing the gene that causing. 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