Batten Disease Support & Research Association

BDSRA Quarterly Grief Chat
2022-05-10 19:00 - 20:00 (America/New_York) | Zoom
BDSRA understands that each stage of this journey is different, and we are here for you. This is an opportunity for loved ones to gather, share and support one another. Please consider joining us at 7:00pm EST on May 10th, 2022.
To register visit: https://web.charityengine.net/GriefChat5/10/22

International Ask-An-Expert | Biotechs and NCL clinical research: Exploring the current landscape
2022-05-05 17:00 - 18:00
Join us for a special edition of BDSRA’s virtual Ask-An-Expert session on Thursday, May 5th at 5 p.m. ET.
This session will feature a panel of Batten experts presenting: Biotechs and NCL clinical research: Exploring the current landscape.
Click here to register!

Facebook: Equipment Exchange Swap Day
2022-04-22 08:00
This is an opportunity for individuals and families to declutter unused equipment and assist other families in the process.
All items posted in the group on the 22 will be viewable to the community. We encourage you to search for items you need and post items you would like to see go to a new home.
To learn more about our year-round equipment exchange efforts visit: https://bdsrafoundation.org/family-grants/
To Participate you must have a Facebook account- Link Below!
Earth Day Equipment Exchange Swap Day | Facebook

Ask-An-Expert: Courageous Parents Network Edition
2022-04-20 18:00 - 19:00
Join us for Ask-An-Expert: Courageous Parents Network Edition on April 20th at 6:00p ET.
Please join BDSRA and Courageous Parents Network as Lord Taylor Blyth; Founder and Executive Director, CPN presents:
When the Ground Shifts; Changes in Your Child’s Baseline and Anticipatory Grief

Support Group Leader Training
2022-04-05 19:00 - 20:00 | Zoom
BDSRA wants to take a moment to thank you for your vulnerability and willingness to step into a leadership role. Volunteering to share your heart, skills, and experience will undoubtedly have a huge impact on those who walk through this journey with you.
We hope this training gives you some extra tools to be the best leader, friend and support to those in your group. We also would like to acknowledge the hard work and dedication it takes to facilitate a peer support group, and we want you to know we are here to support each of you.
To Register Visit: https://web.charityengine.net/SupportGroupLDR0405

Ask-An-Expert Rare & Ready: Clearing Hurdles to Access Rare Disease Therapies
2022-03-29 17:00 - 18:00
Join us to learn more about the Rare & Ready initiative!
Some states are developing detrimental strategies to slow or limit patients’ access to newly approved rare disease therapies. Learn about the programmatic obstacles put into place by Medicaid fee-for-service (FFS) and Medicaid managed care organizations (MCOs) and what families can do to clear these hurdles.
To Register: Click Here

Newly Diagnosed Meet and Greet
2022-03-22 19:00 - 20:00
A place for new families to meet one another, learn more about BDSRA and our mission, and discover opportunities for support throughout their child’s diagnosis. Register by visiting: https://web.charityengine.net/NewlyDiagnosed_Mar22/

Stay Golden: St. Patrick's Day Party
2022-03-10 17:30 - 18:30
Registration is now open for BDSRA’s Stay Golden Saint Patrick’s Day Party taking place Thursday, March 10th at 5:30p EST! Join the BDSRA team for a jolly good party with crafts, games, and a festive book! Register by March 1st. to receive a St .Patrick’s Party Box! (Boxes for U.S Families only). You can register to receive a box or just attend the virtual party. We would be lucky to see you there! Register here: https://web.charityengine.net/StayGoldenParty

Rare Disease Week Debrief Party
2022-03-02 19:00 - 20:00
After a week of advocating for our Batten Community, join BDSRA for a live debrief with staff and others who participated during this week of advocacy. We cannot wait to hear all your stories and victories!
To Register Visit: https://web.charityengine.net/RDWParty

Quarterly Grief Chat
2022-02-22 19:00 - 20:00
BDSRA understands that each stage of this journey is different, and we are here for you. This is an opportunity for loved ones to gather, share and support one another. Please consider joining us at 7:00pm EST on February 22nd, 2022. Join the event with the zoom link that will be sent via email upon registration. Register here: https://web.charityengine.net/GriefChat_Feb2022/

Rare Disease Week on Capitol Hill
2022-02-22 - 2022-03-02
Rare Disease Week on Capitol Hill brings together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates, and share their unique stories with legislators.

Rare Disease Week

Ask-An-Expert: Research Edition
2022-02-21 17:00 - 18:00 | Zoom
Registration is now open! Join us for Ask-An-Expert: Research Edition on Monday, February 21st at 5p EST with Dr. David Pearce. Ask questions and learn about research updates important to our Batten Community during this LIVE Q&A. Register with the link and join from Facebook Live or the webinar link that will be sent via email upon registration. Register with the link provided.

Ask-An-Expert: Clinical Edition
2022-01-18 18:00 - 19:00
Ask-An-Expert: Clinical Edition | January 18th | 6p EST
Learn about clinical updates and ask questions during this LIVE Q&A with Dr. Erika Augustine. Register here: https://web.charityengine.net/ClinicalEdition_Jan2022/
