ALD Community Calendar

Community Call for AMN Men 1/26/2021

Please join us for a community call facilitated by Tim Maguire, Justin D’Agostino, and Ken Dieffenbach on Tuesday, January 26th at 7 PM ET for AMN men. This community call will occur on the fourth Tuesday of every month at 7 PM ET. Please reach out to [email protected] if you have any questions. Please register…

Details

Date:
January 26, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehigwleefbc531ff

Community Call for Newborn Screening, Young Families, and Parents of Asymptomatic Children

Please join us for a community call facilitated by Tara Meady, Suzanne Flynn, and Kathleen O'Sullivan Fortin on Wednesday, January 27th at 7:30 PM ET for Newborn Screening, Young Families, and Parents of Asymptomatic Children. This community call will occur on the last Wednesday of every month at 7:30 PM ET. Please reach out to…

Details

Date:
January 27, 2021
Time:
7:30 pm - 8:30 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehigwlep05b67020

Community Call for Cerebral ALD Patients, Families, and Caregivers (Pre-, Post-, and Non-Transplanted)

Please join us for a Cerebral ALD Community Call facilitated by Jesse Torrey on Tuesday, February 2nd at 8 PM ET for pre-, post-, and non-transplanted families. This community call will occur on the first Tuesday of every month at 8PM ET. Please reach out to [email protected] if you have any questions. Please register using…

Details

Date:
February 2, 2021
Time:
8:00 pm - 9:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehigwlezc4cffc8c

Organizer

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

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 febrero a las 7pm ET y será facilitada por Jean Cappello. Regístrese usando este enlace: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehkwtk77cf9505a7 **No se registre para esta llamada a menos que sea un paciente o un cuidador.   Join us…

Details

Date:
February 15, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehkwtk77cf9505a7

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, February 22nd at 7 PM ET for symptomatic women facilitated by Kathleen O'Sullivan-Fortin and Janis Sherwood. This call will feature a presentation on urinary and bowel dysfunction in ALD women by medical student Camille Corre. Please reach out to [email protected] if you have any questions. Please…

Details

Date:
February 22, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehkwx9z9429a642d

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, February 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=a07ehl5m7ko4e50278e **NOTE: Please do not register for this call unless you are…

Details

Date:
February 23, 2021
Time:
7:00 pm - 8:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehl5m7ko4e50278e

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, 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, 2021
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
View Organizer Website

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…

Details

Date:
March 3, 2021
Time:
8:00 pm - 9:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehl5mz6sc56f11b1

Organizer

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

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

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

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!