ADRENOLEUKODYSTROPHY (ALD) WEBINAR SERIES NSGC, in partnership with PRIME Education and the ALD Alliance, is excited to offer a series of upcoming webinars focused on Adrenoleukodystrophy (ALD). Each live webinar will be offered twice on two different dates. Attendees can earn 0.5 hours of CME/CE for each webinar. Clinical Updates on Newborn Screening and Disease…
Join us on November 13 and 14, 2020 for our virtual ALD Connect Annual Meeting and Patient Learning Academy! Registration is required in order to receive Zoom links and post-meeting materials. Registration is free for patients and caregivers. Click here to register. Our main conference page is here! 2020 ALD Connect Annual Meeting and Patient…
December 9, 2020 at 12 PM EST Register here: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehfpzwin23786c5b We know that MRIs are a very stressful time for ALD families. Please join us to hear from our panel about what to expect during these appointments. Katie Weagle, MS, CCLS Child Life Specialist Shannon Kennedy, BSN, RN Interventional Radiology Nurse Lindsay Guidoboni, RT(R)(MR) BS…
Please join us for a community call facilitated by Tim Maguire, Ken Dieffenbach, and Justin D’Agostino on Tuesday, December 22nd at 7 PM EST for AMN men. 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=a07ehgl3sze77c4718e **NOTE: Please do not register for this call unless you are…
Please join us for a community call on Monday, December 28 at 7 PM EST for symptomatic women facilitated by Kathleen O'Sullivan-Fortin and Janis Sherwood. 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=a07ehgl3t0v1ca8a33a **NOTE: Please do not register for this call unless you are a patient…
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
