fshdsociety.orgFacioscapulohumeral Muscular Dystrophy Info - Treatment - FSHD Society

Lighting the Way to a Cure Financials Patient Library Blog Calendar Search Search Who We AreHistory Mission Our Team Financials Our Impact Therapeutic Accelerator Education Advocacy Our Partners Journey To A Cure 2022 Donor Impact Report Understanding FSHD FSHD Navigator What is FSHD Symptoms Diagnosis Early-onset FSHD Genetic Testing Living with FSHD Newly Diagnosed? Finding Care Symptom Management Patient Library FSHD University Physical Health Wellness Research Get Involved Support Us Ways to Give Become a Torchbearer Raise Awareness Volunteer DIY Fundraisers Advance Research What is a Clinical Trial? Your Involvement Matters Current Trials & Studies Connect Find Your Local Chapter Join the Community World FSHD Alliance Online Communities Events FSHD Connect Conference Walk & Roll to Cure FSHD Events Calendar FSHD 360 Regional Conferences World FSHD Day Research For Patients & Families Advance Research True Cost of FSHD Study TestFSHD genetic testing Current Trials and Studies For Researchers Apply for a Grant Research We Have Funded Resources International Research Congress For Clinicians FSHD Masterclass ICD-10 For Industry Therapeutic Accelerator Clinical Trial Research Network Drug Development Pipeline Voice of the Patient Report Project Mercury News Media Library Blog Living with FSHD Health and Medicine PT and Exercise Tips and Tricks Mental Health FSHD Society News FSHD Research Fundraising & Events Media & PR FSHD Radio: Straight Talk with Tim Hollenback The FSHD Advocate Search Financials Patient Library Blog Calendar JOIN US Donate JOIN US Donate Ensuring no one faces Facioscpulohumeral Muscular Dystrophy (FSHD) alone. Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure and; 2) Ensure those impacted have what they need to live their best life. The FSHD Society has played a key role in the advancement of FSHD therapies and provides support to our community worldwide. Together, we’re poised to reach more milestones in 2024. The Road Ahead Join us for world’s largest gathering for people living with FSHD! Every two years, FSHD Connect brings together hundreds of people with FSHD, clinicians, and researchers for two days of learning and workshops. Join us to hear the latest in research and meet other FSH’ers and families like yours! Join us not only for valuable sessions, but for an opening reception with International Research Congress attendees, and the Connect banquet. Learn More Introducing: FSHD Navigator Have a question, but you’re not sure who to ask? Ask the FSHD Navigators and get connected with a real person. We are here to journey alongside you and give you the resources you need to live your best life with FSHD! Just email us at Navigator@FSHDsociety.org, call 781-301-6060 x4000, or submit a question . Learn More Advance Research Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster. HELP ADVANCE RESEARCH Educate Yourself FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD. The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found. LEARN MORE Build Community There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person’s unique strengths, skills, and interests that makes our community strong. GET INVOLVED Invest in Hope We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved. SEE HOW YOU CAN HELP Play Video Who We Are The FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions. Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone. Education: A Patient’s Best Weapon for Change FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health , Wellness , and Research provide videos, articles, and other resources, by the world’s top experts, including many people living with FSHD. FSHD University is a place for you to gain knowledge, get connected, and find hope. Learn More & Enroll in FSHD-U Latest Blog Posts Connecting to others is essential to your health April 25, 2024 by jkinoshita Friendships are built intentionally by Gregg Lichtenstein, Margate City, New Jersey The 1970s band Three Dog Night proclaimed that One is the loneliest number that you’ll ever do.” For all of us, particularly those with a challenge like FSHD, it is all too easy to relate to this song – unless we establish strong relationships… Read More... Calgary 360 slides April 7, 2024 by jkinoshita Here are the slides from the Calgary FSHD 360 meeting on March 16, 2024. Welcome! What is a 360? What is the CTRN? Beth Johnston, FSHD Society, and Neil Camarta, FSHD Canada Fdn. FSHD 101 and overview Lawrence Korngut, MD,… Read More... SEE ALL BLOG POSTS Upcoming Events Loading view. Featured Events Featured Today Now Now - 2024-05-16 May 16 Select date. May 2024 Mon 13 Featured Featured May 13 @ 4:00 pm - 5:00 pm Event Series Wellness Hour (Virtual Meeting) Wellness Hour – Making important decisions Zoom Virtual Meeting , United States 5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT Chaplain Deb Calhoun Many of us procrastinate when it comes to planning for the future, especially when the future could include illness, disability, having to find caregivers, financial uncertainty, or the prospect of having to turn over control of your... Tue 14 Featured Featured May 14 @ 8:00 am Event Series FSHD Radio: Straight Talk with Tim Hollenback FSHD Radio: Straight Talk with Tim Hollenback Facebook and YouTube In this laid back episode, Tim discusses music, San Diego chapter program involvement, and staying strong in the face of slow progression with Callum Arras. Bridging their nearly 20 year age gap, Hollenback and Arras find common ground in their belief that self-knowledge, willpower, and determination help them maintain activities, mobility, and their sense of... Thu 16 Featured Featured May 16 @ 1:00 pm - 2:00 pm FSHD University – Project Mercury Zoom Web Conference , United States 1:00 PM ET | noon CT | 11:00 AM MT | 10:00 AM PT Josie Godfrey There is great progress toward new medicines for FSHD, but even when a drug does make it to market, patients may not be able to afford it because insurers and government payers often delay or deny access because they... Previous Events Today Next Events Subscribe to calendar Google Calendar iCalendar Outlook 365 Outlook Live Export .ics file Export Outlook .ics file SEE ALL EVENTS Sign up for Email Alerts Stay up to date with the latest FSHD news and updates from FSHD Society. CONNECT WITH US General Mailing Address: 75 North Main Street, Suite 1073 Randolph, MA 02368 U.S.A. Mail Donations to: FSHD Society P.O. Box 411617 Boston, MA 02241-1617 (781) 301-6060 DONATE Donate Join Us Inclusivity & Equity Privacy Policy Contact Us Glossary Of Scientific Terms Digital Marketing...