ALD Connect

ALD Basics and Current Treatments, Questions and Answers (in Spanish)

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 … Continued

Reproductive Options for ALD Families

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 … Continued

2021 ALD Family Weekend

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 … Continued

Support Group for Caregivers of Adult Patients

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,” … Continued

Psychological Impact of ALD Workgroup

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

Bootcamp: Newborn Screening and Non-Cerebral

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 … Continued