ALD Community Calendar

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, February 24th at 7:30 PM E.T. 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=a07ehl5mywq8702ede2 **NOTE: Please do not…

Details

Date:
February 24
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehl5mywq8702ede2

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

Community Call: Cerebral ALD

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Wednesday, March 3rd, 2021 at 8 PM EST for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. **Please note that this month's call will be held on a Wednesday instead of the usual Tuesday…

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

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…

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

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…

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

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…

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

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
End:
March 21
Website:
https://www.aldfamilyweekend.com/

Organizer

The Painted Turtle
Email:
admissions@thepaintedturtle.org
Website:
https://www.aldfamilyweekend.com/

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…

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

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…

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

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
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
Time:
1:00 pm - 2:00 pm
Website:
https://www.flipcause.com/secure/cause_pdetails/MTExMzk1

Organizer

ALD Alliance
Website:
https://www.aldalliance.org/

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…

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

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…

Organizer

ALD Connect
Phone:
(833) 525-3266
Email:
info@aldconnect.org
Website:
https://aldconnect.org/

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!