ALD Community Calendar

llamada comunitaria en español

¡Únase a nosotros para una llamada comunitaria de ALD Connect en español! La llamada se llevará a cabo el 15 de marzo a las 7pm ET y será facilitada por Jean Cappello. Regístrese usando este enlace: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxe2ye51bf4fe6 **No se registre para esta llamada a menos que sea un paciente o un cuidador. Join us for an…

Details

Date:
March 15, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxe2ye51bf4fe6

Organizer

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

WorkGroup 4 March Meeting

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 for…

Details

Date:
March 18, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehp7for051741fbf

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

Community Call: Symptomatic Women

Please join us for a community call on Monday, March 22nd at 7 PM Eastern Time 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=a07ehoxewzi558411a6 **NOTE: Please do not register for this call unless you are a…

Details

Date:
March 22, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxewzi558411a6

Organizer

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

Community Call: AMN Men

Please join us for a community call facilitated by Tim Maguire, Ken Dieffenbach, and Justin D’Agostino on Tuesday, March 23rd 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=a07ehoxexgo1755e741 **NOTE: Please do not register for this call unless you are…

Details

Date:
March 23, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxexgo1755e741

Organizer

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

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,”…

Details

Date:
March 24, 2021
Time:
7:00 pm - 8:00 pm

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

Details

Date:
March 30, 2021
Time:
1:00 pm - 2:00 pm
Website:
https://www.flipcause.com/secure/cause_pdetails/MTExMzk1

Organizer

ALD Alliance
View Organizer Website

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, March 31st at 7:30 PM Eastern Time for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxfi0nbf0bb896 **NOTE: Please do not…

Details

Date:
March 31, 2021
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxfi0nbf0bb896

Organizer

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

Community Call: Cerebral ALD

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Tuesday, April 6th, 2021 at 8 PM Eastern Time 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=a07ehoxfig4cf34398e **NOTE: Please do not register for this call unless…

Details

Date:
April 6, 2021
Time:
8:00 pm - 9:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehoxfig4cf34398e

Organizer

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

Community Call: Symptomatic Women

Please join us for a community call on Monday, April 26th at 7 PM EDT for symptomatic women facilitated by Kathleen O'Sullivan-Fortin and Janis Sherwood. This call will include a guest appearance by neurologist Dr. Ali Fatemi from Kennedy Krieger Institute who will answer questions. Please reach out to [email protected] if you have any questions.…

Details

Date:
April 26, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva0wyg3f95fdd0

Organizer

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

Community Call: AMN Men

Please join us for a community call facilitated by Tim Maguire, Ken Dieffenbach, and Justin D’Agostino on Tuesday, April 27th at 7 PM EDT for AMN men. Please reach out to [email protected] if you have any questions. Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva1o82cae81d1f **NOTE: Please do not register for this call unless you…

Details

Date:
April 27, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva1o82cae81d1f

Organizer

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

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, April 28th at 7:30 PM Eastern Time for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. Please use the following link to register: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva2e6682b10441 **NOTE: Please do…

Details

Date:
April 28, 2021
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehva2e6682b10441

Organizer

ALD Connect
Phone
(833) 525-3266
Email
info@aldconnect.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!