ALD Community Calendar

Bootcamp: Newborn Screening and Non-Cerebral

ALD Connect will be hosting four Bootcamps in 2021. These will be half-day virtual meetings. Each will consist of four webinars and an Ask the Experts session. Register here. 11:00 AM EDT Standards of Care, Assessments 12:00 PM EDT Crucial Conversations 1:00 PM EDT Mental Health and Impact on Relationships and Families 2:00 PM EDT…

Details

Date:
May 1, 2021
Time:
11:00 am - 4:00 pm

Organizer

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

Bootcamp: Cerebral ALD

ALD Connect will be hosting four Bootcamps in 2021. Register here: http://events.constantcontact.com/register/event?llr=e8ntkipab&oeidk=a07ehz9y6i6e3967965 Cerebral ALD Bootcamp (May 22, 2021) 11:00 AM Transplant 101: BMT and Gene Therapy 12:00 PM Session 2: Preparing Your Family for Transplant 1:00 PM Session 3: Life After Leaving the Hospital 2:00 PM Session 4: Taking Care of the Caretakers 3:00 PM…

Details

Date:
May 22, 2021
Time:
11:00 am - 4:00 pm

Organizer

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

Bootcamp: Men with AMN

Please join us for our ALD Connect Bootcamp for Men with AMN on Saturday, June 12, 2021 from 11:00 AM-4:00 PM. The Bootcamp will consist of four webinars and an Ask-the-Experts session. We are finalizing topics and presenters. Our current tentative schedule is: 11:00 AM Standards of Care, Dr. Florian Eichler 12:00 PM Cerebral ALD,…

Details

Date:
June 12, 2021
Time:
11:00 am - 4:00 pm

Organizer

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

June Workgroup 4 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…

Details

Date:
June 17, 2021
Time:
7:00 pm - 8:00 pm

Organizer

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

Bootcamp: Women with ALD

Symptomatic Women with ALD Bootcamp August 7, 2021 Register here: https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ei9g462x0097a356&oseq=&c=&ch= *schedule subject to change* 11:00 AM EDT WEBINAR Overview of Symptoms in Women with ALD 12:00 PM EDT WEBINAR Symptom Management 1:00 PM EDT WEBINAR Coping with an ALD Diagnosis 2:00 PM EDT WEBINAR Looking Ahead: Future studies 3:00 PM EDT OPEN DISCUSSION Ask…

Details

Date:
August 7, 2021
Time:
11:00 am - 4:00 pm

Organizer

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

August Workgroup 4 Meeting – CANCELLED!

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…

Details

Date:
August 19, 2021
Time:
7:00 pm - 8:00 pm

Organizer

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

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

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!