ALD Community Calendar

Please join us for a community call facilitated by Tara Meady, Suzanne Flynn, and Kathleen O’Sullivan Fortin on Wednesday, December 30 at 7:30 PM EST for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3t37d4665278 **NOTE: Please do…

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Monday, January 5, 2021 at 8 PM EST for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3t3c496e4b31 **NOTE: Please do not register for this call unless you…

Register here: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehi2yjb99d7f1fb1 ALD Connect - ALD Basics and Current Treatments, Q&A (in Spanish) January 20, 2021 at 1PM Eastern Dr. Patricia Musolino Assistant Professor of Neurology Massachusetts General Hospital Harvard Medical School Dr. Patricia Musolino is a Spanish-speaking ALD expert. She will present "ALD Basics and Current Treatments" in Spanish and answer questions from…

Please join us on Friday, March 5, 2021 at 5pm EST for a discussion about Reproductive Options for ALD families. Click here to register and receive the Zoom link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehlpvq27b8bf0df0 Panelists Dr. Sara Vaughn Fertility Specialist Spring Fertility Dr. Troy Lund Pediatric BMT Physician University of Minnesota Leukodystrophy Center Dr. Amber Salzman President & CEO…

2021 ALD Family Weekend ALD Family Weekend will be held March 19-21, 2021. Due to continuing COVID-19 restrictions and safety protocols, we will again welcome you all to a special online version of Family Weekend. All ages are welcome to join us free for three days of family fun, informative sessions, real time sing-a-longs, dance…

For families, partners, and other caregivers, who want a safe place to discuss the stresses, challenges, and rewards of providing care for adults with Leukodystrophies. The discussion will be led by Margaret Halter and Roger Locy. Being a caregiver can feel a lot like being a lone ranger. We know other caregivers are “out there,”…

Our goal is to provide tangible resources to families receiving this diagnosis. We will begin this effort by focusing on families receiving an ALD diagnosis at birth, but are welcoming all members of the ALD community to offer their valuable input. Click here to register: https://www.flipcause.com/secure/cause_pdetails/MTExMzk1

ALD Connect will be hosting four Bootcamps in 2021. These will be half-day virtual meetings. Each will consist of four webinars and an Ask the Experts session. Register here. 11:00 AM EDT Standards of Care, Assessments 12:00 PM EDT Crucial Conversations 1:00 PM EDT Mental Health and Impact on Relationships and Families 2:00 PM EDT…

ALD Connect will be hosting four Bootcamps in 2021. Register here: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehz9y6i6e3967965 Cerebral ALD Bootcamp (May 22, 2021) 11:00 AM Transplant 101: BMT and Gene Therapy 12:00 PM Session 2: Preparing Your Family for Transplant 1:00 PM Session 3: Life After Leaving the Hospital 2:00 PM Session 4: Taking Care of the Caretakers 3:00 PM…

Please join us for our ALD Connect Bootcamp for Men with AMN on Saturday, June 12, 2021 from 11:00 AM-4:00 PM. The Bootcamp will consist of four webinars and an Ask-the-Experts session. We are finalizing topics and presenters. Our current tentative schedule is: 11:00 AM Standards of Care, Dr. Florian Eichler 12:00 PM Cerebral ALD,…

Q: Are you ready to make a difference and help the ALD Community with outreach and education projects? Do you have ideas for resources that are missing or could be improved upon for patients and families with ALD? Are you curious how you might be able to advance a cure for ALD? A: JOIN US…

The ULF is thrilled to be offering the Scientific Symposium virtually this year on Thursday, June 24th! Registration is now open – click here. The program is here.