ALD Community Calendar

2021 Outrun ALD Virtual 5K

X out ALD will host the 2nd annual Outrun ALD 5k on September 18th, 2021.  The 2021 Outrun ALD 5K will be virtual event once again this year. Outrun ALD raises funds for ALD research at the University of Minnesota's Leukodystrophy Center. Email [email protected] with questions. Follow X out ALD on Facebook and Instagram or visit our…

Details

Date:
September 18, 2021

Organizer

X out ALD
Email
xoutald@gmail.com
View Organizer Website

ALD Connect 2021 Annual Meeting and Patient Learning Academy (virtual)

Please join us for our virtual 2021 Annual Meeting and Patient Learning Academy on November 12 and 13, 2021! Please register using the following link: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eij22re70cedbd91

Details

Start:
November 12, 2021 @ 8:00 am
End:
November 13, 2021 @ 5:00 pm
Website:
http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07eij22re70cedbd91

Organizer

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

Knockout ALD: Run for ALD, Cure the Boys (5K/1 mile)

Knockout ALD organizes and hosts the Run for ALD, Cure the Boys 5K and a one-mile-walk event in Maryland Heights, Missouri, to raise money for the ALD Research Fund at the University of Minnesota. This year's event will be in person and virtual, on November 20, 2021. Email Julie at [email protected] with questions.

Details

Date:
November 20, 2021
Time:
9:00 am - 12:00 pm
Website:
www.knockoutald.com

Organizer

Knockout ALD
Email
RunforALD@yahoo.com
View Organizer Website

2022 Outrun ALD 5K

Please join X out ALD on September 17, 2022 for our Third-Annual Outrun ALD 5K. Outrun ALD will be held as a virtual event once again this year. Run, walk, bike or cheer wherever you are while helping raise awareness and funds to support the tireless efforts of the physicians and researchers at the University…

Details

Date:
September 17, 2022
Website:
https://runsignup.com/Race/Info/MN/Minneapolis/OutrunALD

Organizer

X out ALD
Email
xoutald@gmail.com
View Organizer Website

Patient-Led Planning Committee (A.K.A. Workgroup 4)

Please join ALD Connect for a discussion about ALD events, programs, projects, and initiatives at a Patient-Led Planning Committee meeting. This meeting, also known as Workgroup 4, is a place for ALD patients and families to lead the way in brainstorming ideas and resources for the ALD community. This group operates on a drop-in basis,…

Details

Date:
June 19
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/vj799up

Organizer

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

Structured Community Call: Mental Health

Please join us for a topic-based Community Call focused on mental health, facilitated by Jesse Torrey, LAC. This month's call will be focused on Redefining Hope. The call will be held on Thursday, June 20th at 7pm EDT. Please reach out to [email protected] if you have any questions. You can register for the call using…

Details

Date:
June 20
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/hgqpfha

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, June 24th at 7 PM EDT for symptomatic women with ALD facilitated by Janis Sherwood and Kathleen O'Sullivan-Fortin. Please reach out to [email protected] if you have any questions. You can register using the following link: https://lp.constantcontactpages.com/ev/reg/q428zvm *Please note this call is for patients and caregivers only

Details

Date:
June 24
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/q428zvm

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 Ken Dieffenbach and Tim Mathwig on Tuesday, June 25th at 7 PM EDT for AMN men. You can register for the call using the following link: https://lp.constantcontactpages.com/ev/reg/qq2j2jj *Please note this call is for men with AMN. If you are a caregiver who wants to support a…

Details

Date:
June 25
Time:
7:00 pm - 8:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/qq2j2jj

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 Suzanne Flynn, Tara Meady, and Kathleen O'Sullivan-Fortin on Wednesday, June 26th at 7:30 PM EDT for Newborn Screening, Young Families, and Parents of Asymptomatic Children. Please reach out to [email protected] with any questions. You can register for the call using the following link: https://lp.constantcontactpages.com/ev/reg/32ewqtr *Please note…

Details

Date:
June 26
Time:
7:30 pm - 8:30 pm
Website:
https://lp.constantcontactpages.com/ev/reg/32ewqtr

Organizer

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

Community Call: 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 Thursday, June 27th at 5:00 PM EDT for pre-, post-, and non-transplanted families. Please reach out to [email protected] if you have any questions. You can register for the call using the following link: https://lp.constantcontactpages.com/ev/reg/rzxcuep *Please note this call is for patients…

Details

Date:
June 27
Time:
5:00 pm - 6:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/rzxcuep

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 ALD en español! Esta convocatoria es un proyecto conjunto entre la Fundación Lautaro te Necesita y ALD Connect y será facilitada por Verónica de Pablo y Jean Cappello. La convocatoria se realizará el 16 de julio a las 5pm EDT (hora UTC-4) / 18 hs de Argentina. Regístrese…

Details

Date:
July 16
Time:
5:00 pm - 6:00 pm
Website:
https://lp.constantcontactpages.com/ev/reg/8u2qjy8

Organizer

Fundación Lautaro te Necesita y ALD Connect

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!