ALD Community Calendar

ALD Connect Webinar: Physical Therapy for AMN Patients

Please join us for a webinar on Monday, July 20th at 7 PM EDT regarding physical therapy techniques for AMN patients. Panelists for this webinar include Jen Keller, PT, Kathy Zackowski, PhD, OTR, MCCS, Patrick Broussard, and Tim Maguire. Please reach out to [email protected] with any questions. Use the link below to register for this…

Details

Date:
July 20, 2020
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eh79nosz251a4bcf

Clinical Updates on Newborn Screening and Disease Monitoring in Adrenoleukodystrophy

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…

Details

Date:
September 30, 2020
Time:
2:00 pm - 3:00 pm
Website:
https://primeinc.org/webinars/3883

CLINICAL UPDATES ON NEWBORN SCREENING AND DISEASE MONITORING IN ADRENOLEUKODYSTROPHY

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…

Details

Date:
October 21, 2020
Time:
2:00 pm - 3:00 pm
Website:
https://primeinc.org/webinars/3883

2020 ALD Connect Annual Meeting and Patient Learning Academy

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…

Details

Start:
November 13, 2020 @ 10:00 am
End:
November 14, 2020 @ 6:00 pm

MRI Webinar

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…

Community Call: AMN Men

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…

Details

Date:
December 22, 2020
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3sze77c4718e

Community Call: Symptomatic Women

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…

Details

Date:
December 28, 2020
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3t0v1ca8a33a

Community Call: Newborn Screening, Young Families, Parents of Asymptomatic Children

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…

Details

Date:
December 30, 2020
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3t37d4665278

Community Call: Cerebral ALD

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…

Details

Date:
January 5, 2021
Time:
8:00 pm - 9:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehgl3t3c496e4b31

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…

Details

Date:
January 20, 2021
Time:
1:00 pm - 2:00 pm

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…

Details

Date:
March 5, 2021
Time:
5:00 pm - 7:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehlpvq27b8bf0df0

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.org
View Organizer Website

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…

Details

Start:
March 19, 2021
End:
March 21, 2021
Website:
https://www.aldfamilyweekend.com/

Organizer

The Painted Turtle
Email
admissions@thepaintedturtle.org
View Organizer Website

If you would like to add an event to the ALD Community Calendar, please email your event details [email protected]. Please include the name of the event, description, and contact information. Thank you!