Batten Disease Support & Research Association

Board of Directors Meeting
2023-12-03 | Zoom
The BDSRA Foundation Board of Directors will meet virtually on Sunday, December 3, 2023, at 4 p.m. EST. The meeting agenda is below.

REGENXBIO Webinar
2023-11-30 18:00 - 19:00 (America/New_York) | Zoom
Have questions on the latest news concerning REGENXBIO and its halted gene therapy programs for CLN2 Batten disease? Join us for a webinar on Thursday, November 30, at 6 p.m. EST.
This webinar will be hosted by BDSRA Head of Research & Medical Affairs Dr. Ineka Whiteman, who’ll be joined by BDSRA board members Dr. David Pearce and Dr. Fernanda Leal-Pardinas. Dr. Whiteman will provide the latest news on REGENXBIO’s Batten disease programs, followed by a Q&A.
Those who wish to attend MUST register. Register before the webinar’s start time on Nov. 30.
Click here to register.

2023 Boo Bash
2023-10-24 18:00 - 19:00 (America/New_York) | Zoom
Grab your costumes and join us for a frightfully FUN time at the 2023 Boo Bash taking place on Tuesday, October 24 at 6 PM EDT via Zoom!
The deadline to order party kits has passed. You may purchase the supplies by visiting clicking the links below.
“How to Catch a Witch” Book
Boo Bash Craft
A zoom link will be sent to the email address you use to register, along with instructions on how to join in the SPOOK-tacular fun. Families are welcome to request a kit for each child who will be participating!
Click here to register!

Fall Grief Chat
2023-10-02 19:00 - 20:00 (America/New_York) | Zoom
Join the Batten community for BDSRA’s Fall Grief Chat on October 2 at 7 p.m. EDT. Three sessions lead by community members will be offered — one each for Bereaved SIBs (led by SIBs leader Jeni Montavon), active parents and caregivers (led by Dr. Joseph Vigil), and bereaved parents and caregivers as part of the Life Goes On program (led by bereaved parent Peggy DiCapua).
Please select a ticket for the session that best fits your needs. Please register individually. Once you register, you will receive an email confirmation and a Zoom link for the session you chose.
Click here to register.

Dog Days of Summer Party
2023-08-23 18:00 - 19:00 (America/New_York) | Zoom
The summer days are hot, but hanging out with your BDSRA pack is so cool! Join us for a howling good time during the Dog Days of Summer Party Wednesday, August 23rd at 6:00 PM EST.

The deadline to order party kits has passed. You may still register to attend the party. Click here if you wish to purchase the book that’ll be read during the party yourself.
A zoom link will be sent to the email address you use to register, along with instructions on how to join in the fun. Families are welcome to request a kit for each child who will be participating!
Click here to register!

Annual Family Conference | Denton, TX
2023-07-14 - 2023-07-16
Visit the Family Conference Home Page

International Batten Disease Awareness Day/Virtual 5K
2023-06-09 - 2023-06-11
Our goal is to honor and support those affected by Batten disease and to raise awareness and funds so BDSRA can continue to advocate for all CLN types.
UPDATE: Donations will be accepted through Sunday, June 11th.
About this event: Join us as we celebrate families around the world and raise awareness and funds! BDSRA is hosting the 2023 International Batten Disease Awareness Day Virtual 5K on Friday, June 9th, 2023.
SIGN UP ON THE OFFICIAL REGISTRATION PAGE HERE
What exactly IS a Virtual 5K?: It is just like any other 5K, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you get to choose where, with whom, and even how you want to complete the 5K. This 5K can be done at any time leading up to June 9th. It can even be done in increments, keep track of your distance until you hit the 5K.
How to participate to raise funds and awareness: This event is open to individuals of all ages and abilities. Once you register, either as an individual or as part of a team, the focus then shifts to raising funds. Set a personal/team fundraising goal and encourage your family, friends, community, etc. to donate to your fundraisers. BDSRA set a $10,000 goal this year. The proceeds you raise towards that goal help BDSRA build and maintain staff who’ll provide compassionate support and advocacy for all types of Batten disease.

During International Batten Disease Awareness Day we ask participants to post pictures of themselves on their 5K route. Tag BDSRA in your posts and use the hashtag #BattenDay2023. By using #BattenDay2023 and tagging BDSRA on your social media posts, we will be able to keep up with the fun.
Ordering T-Shirts: Pictured below are this year’s T-shirts.
Front Back

UPDATE: The T-shirt order deadline has passed.
Racing Bibs: Who are you running for in this virtual 5K? Click the button below to download this year’s racing bib and write who you’re dedicating your virtual walk/run for. Share on social media, use the hashtag #BattenDay2023, and tag BDSRA to have your post shared!
Click here to download your racing bib!

BDSRA Board of Directors Quarterly Meeting
2023-04-23 17:00 - 19:00 (America/New_York)
BDSRA’s Quarterly Board Meeting will take place Sunday, April 23rd from 5-7 p.m. EST via Zoom.
Take a look at the meeting agenda below.

BDSRA Virtual Family Valentine's Day Party
2023-02-15 18:00 - 19:00 (America/New_York)
Love is in the air! Join us for the BDSRA Virtual Family Valentine’s Day Party on Wednesday, February 15th at 6 p.m. EST.
The deadline for reserving party kits has passed, but families can still register to attend the event and purchase the book that’ll be read during the party (the link for the book is on the registration page).
Click here to register!

BDSRA Board of Directors Quarterly Meeting
2023-01-21 09:00 - 17:00 (America/Chicago)
BDSRA’s Quarterly Board Meeting will take place Saturday, January 21st from 9 a.m. to 5 p.m. CST in Chicago. Take a look at the meeting agenda by clicking the link below.
Click here to view the Board Meeting Agenda.

Martin Luther King Jr. Day (Office Closed)
2023-01-16
The BDSRA Foundation office will be closed on Monday, January 16th in observance of Martin Luther King Jr. Day.

Holiday Grief Chat
2022-12-14 18:00 - 19:00 UTC
BDSRA Foundation will host a Holiday Grief Chat on Wednesday, December 14th at 6:00 p.m. EST. BDSRA knows the holidays can be a difficult time for grieving individuals and families. This is an opportunity for loved ones to gather, share and support one another. Register by clicking the link below and join the event with the zoom link that will be sent via email following registration.
Click here to register.

3rd Annual BDSRA Boo Bash
2022-10-25 18:00 - 19:00 UTC
Autumn leaves are falling which means Halloween is calling! Join us for the 3rd Annual BDSRA Boo Bash taking place on October 25th at 6 p.m. EST! Prepare for an evening filled with tricks, treats, activities, and a story! The deadline for activity boxes (limited to U.S. families only) is Tuesday, October 11th.

Click the link below to register and join the event on October 25th with the zoom link sent after registration.
Click here to register!

Peer Support Group Leader Training
2022-10-04 19:00 - 20:00 UTC
Join us for BDSRA Peer Support Group Leader Training on Tuesday, October 4th at 7 p.m. EST. This session is open to anyone interested in helping others share their stories, supporting them during their Batten journeys, and leading support groups for the Batten community.
Click the link below to register and join the session on October 4th with the zoom link sent after registration.
Click here to register!

Bike For Batten 2022 (Colville, WA)
2022-09-24 09:00 - 11:30 (America/Los_Angeles)
Registration for the 2nd Annual Bike for Batten fundraiser is open!
This fundraiser, organized by Bekah Murphy, a CLN2 Batten aunt, features bike rides in Nampa, Idaho on Saturday, September 17th and Colville, Washington on Saturday, September 24th.
Click here to read Bekah’s story and register!

Advocacy Committee Meeting
2022-09-18 19:00 - 20:00 UTC
Our Advocacy Committee invites you to discuss local and federal advocacy efforts, Newborn Screening, Rare Disease Week, how to share your story, and more!
Virtual meetings will be held on the third Sunday of each odd month at 7 p.m. ET. The first meeting will be held on Sunday, September 18th!
Please email info@bdsrafoundation.org to get started!

Bike For Batten 2022 (Nampa, ID)
2022-09-17 09:00 - 12:00 (America/Denver)

BDSRA Quarterly Grief Chat
2022-09-08 19:00 - 20:00 UTC
The BDSRA Foundation will host its next Quarterly Grief Chat on Thursday, September 8th at 7:00 p.m. EST. This is an opportunity for loved ones to gather, share and support one another. BDSRA understands that each stage of this journey is different, and we are here for you.
Register to attend by visiting this link: https://web.charityengine.net/Default.aspx?tsid=22540
Join the event with the zoom link that will be sent via email following registration.

Ask-An-Expert: BDSRA Family Conference Research Presentations Debrief
2022-08-17 18:00 - 19:00 UTC
Join us for Ask-An-Expert: BDSRA Family Conference Research Presentations Debrief on Wednesday, August 17th at 6 p.m. EST with Batten experts. This session will recap the research presentations at this year’s Family Conference and have a live Q&A.
Register by visiting this link: https://web.charityengine.net/Default.aspx?tsid=22383

BDSRA Virtual Summer Bash
2022-06-21 18:00 - 19:00 (America/New_York)
Registration is open for BDSRA’s Virtual Summer Bash that will take place on Tuesday, June 21 at 6 p.m. ET!
Join us for an evening filled with activities we hope bring joy to your entire family and help kick start your summer fun!
Register by Wednesday, June 8th to receive your free activity box. Activity boxes are limited to U.S. families at this time.
Click here to register!

International Batten Awareness Day 2022
2022-06-09 08:00 - 20:00 (America/New_York)
Click Here to Register!

June 9th is International Batten Disease Awareness Day!
Our goal is to honor and support those affected by Batten disease and to raise awareness.

About this event
Join us as we celebrate families around the world and raise awareness! BDSRA is hosting the 2022 International Batten Disease Awareness Day Virtual 5K on June 9th, 2022.

What exactly IS a Virtual 5K?
It is just like any other 5K, except there is no official race location. The virtual part of this means no traveling and no early start times! It also means you get to choose where, with whom, and even how you want to complete the 5K. This 5K can be done at any time leading up to June 9th. It can even be done in increments, keep track of your distance until you hit the 5K.

How to participate to raise funds and awareness
This event is open to individuals of all ages and abilities. Once you register, either as an individual or as part of a team, you are set.

Since this is not a sanctioned event, there is no penalty if you are unable to complete any or all of the 5K. However, during International Batten Disease Awareness Day we will be asking participants to post pictures of themselves on their 5K route.

This is completely optional – but since our goal is to bring awareness to Batten disease, we want to do just that. And by using #battenday2022 and tagging @BDSRA on your social media posts, we will be able to keep up with the fun. We will highlight posts tagged with @BDSRA in our June Illuminator which will be published June 30, 2022.

International Batten Awareness Day 2022 – Batten Disease Support & Research Association (bdsra.org)

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 (America/New_York)
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 (America/New_York)
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 (America/New_York)
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 (America/New_York) | 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 (America/New_York)
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 (America/New_York)
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 (America/New_York)
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 (America/New_York)
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
