Sisters' Hope Foundation

?? Support group reminder! Tonight! Have a question you need advice on? Want to meet other patients and care partners? Join us for our virtual March Support Group on Friday 3/28 at 8pm EST/7pm CST. Our support groups are an open discussion and forum for anything you want to talk about. We're looking forward to seeing you there! To join the Zoom meeting, click on the link below. OR visit our Facebook events page and click "Go To Link" in the March support group event. OR visit our website www.sistershopefoundation. org, click the scrolling banner on the home page. https://zurl.co/S80Oo #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness #supportgroup #carepartner #caregiver

Have you heard?! We’ll be ending our 2025 ALSP Community Conference with a benefit concert by Philly’s favorite cover band.. MR. GREENGENES! Saturday June 21st, 2025 Live! Casino & Event Center Doors 7:30pm, Show 8:30pm All Ages (Under 21 with Parent/Guardian) Take a night off from the ups & downs, stress and hardship of life to escape reality for a few hours of incredible music with friends and family… a celebration of our patients, care partners and amazing ALSP community! Tickets on sale NOW: https://lnkd.in/gp2nh7qE

As requested.. We'll be highlighting a behind the scenes look at Sisters' Hope Foundation and what our team members do! First up, our Executive Director, Erin Sullivan, sharing what's on her calendar this week! #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

???? You can now request the #pinkandpurplecar for your next event! Head to our (new!) website, https://lnkd.in/gYbYCu6q, go to the "Get Involved" heading and select HopeMobile! #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

Our 2025 ALSP Community Conference will be held on June 20th & 21st in Philadelphia, PA! We're excited to announce that among other presenters, Dr. Jennifer Orthmann-Murphy will be delivering the keynote address and Dr. Roberta La Piana will be sharing about her latest ALSP research. Your attendance and support allows us to bring the latest research, news and developments to our patients, care partners, medical professionals and industry partners as we collectively work towards a cure for ALSP! ?? Friday 6/20: FDA Patient Focused Drug Development (PFDD) session for patients and care partners. ?? Saturday: ALSP Community Conference! Date: Saturday, June 20th, 2025 Time: 8am-4pm Venue: Live! Casino & Hotel, Philadelphia, PA Register here: https://zurl.co/SQHzG (Attendance is free for patients & care partners!) *Ticket includes breakfast, lunch & snacks. ?? Saturday Night: Enjoy a carefree night with friends and family at our Rock Out ALSP Benefit Concert with Philly's favorite cover band, Mr. Greengenes! For more information, visit sistershopefoundation.org Sponsored by Vigil Neuro #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

The Rare Impact Awards represent NORD's annual celebration of individuals, organizations, and companies working to better the lives of the rare disease community through advocacy, research, and drug development.? "The National Organization for Rare Disorders (NORD?) is proud to honor the achievements of our community. Now is your opportunity to nominate your rare disease hero, an individual or a group who is driving progress on behalf of the more than 30 million Americans living with rare disease." Nominations for 2025 are now open! Visit https://rareimpact.org to submit your nomination. #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

? Our monthly newsletter had a glow-up! Not a subscriber? Then head to sistershopefoundation.org, scroll to the bottom of the homepage and enter your email in the Subscribe box! #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness

Our poster from the GLIA-CTN Conference can now be viewed and downloaded on our website! Go to the "Support & Resources" tab then click on Webinars & Presentations. https://zurl.co/Yofhq

EL-PFDD stands for externally-led patient-focused drug development session. PFDD's provide a platform for patients, their families and caregivers to share their experiences, challenges, and hopes directly with regulators, researchers, and pharmaceutical companies. As experts in what it is like to live with their condition, patients are uniquely positioned to inform the understanding of the therapeutic context for drug development and new treatments and their approval by the U.S. Food and Drug Administration (FDA).? PFDD's can be either FDA-Led or Externally-Led by a patient advocacy group such as Sisters' Hope Foundation. Our EL-PFDD will take place on Friday June 20th, 2025 from 1pm-5pm in Philadelphia, PA. We're encouraging all patients, family members and caregivers to attend either in-person or virtually.? ? For more information and to register, visit ?? https://zurl.co/MBQLB #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #raredisease #rarediseaseadvocate #rarediseaseawareness #elpfdd #pfdd #voiceofthepatient

Subscribe to our monthly newsletter for updates on the latest ALSP research, fundraisers & events, virtual support groups and awards & recognition! To sign up, visit our website: https://zurl.co/sHxws #alsp #alspawareness #csf1r #leukodystrophy #leukodystrophyawareness #multiplesclerosis #parkinsons #alzheimers #dementia #raredisease #rarediseaseadvocate #rarediseaseawareness