Not giving up
As a rare disease, receiving a diagnosis of leukodystrophy can feel incredibly isolating. Connecting with others who can relate to your journey can have a profound affect on your mental health. Sharing your story can bring catharsis while simultaneously providing others with an intimate look into your daily life with leukodystrophy. It creates awareness for a disease that not many people know about.
Leukodystrophy awareness is something near and dear to our hearts and we hope that you can share your story, your passion, and your hope.
Shared Stories:
- A Legacy of Hope: Join Bob & Yvonne in Supporting the ULF
- Finding Strength in Community: Jen’s Story
- Living with ALD: A Journey of Strength and Community
- A Special Year-End Message from Dr. Mousumi Bose
- Help Us Bring Hope to Families Like Isabella’s This Holiday Season
- Beverly’s Journey of Hope & Giving Back
- Daniil’s Story
- Arne
- Heather & Holly, ALSP
- Axel Riordan, MLD
- Shari S., ALD
- Amera Reed, ACER3
- Dylan Joseph Changle, Krabbe Disease
- Kristie DeMarco, Refsum Disease
- Sam Buck, VWM
- Addy Moss, 4H Syndrome
- Henry Crawley, PMLD
- Andy Fingeroot, Canavan
- Nicki Jorgensen, ALD
- Kristy Kintner, MLD
- Ashley Wolf, CTX