Not only did we reach our $75,000 fundraising goal, we surpassed it by over $9,000! We here at BDSRA continue to be amazed by our Batten community’s determination, persistence, and support. Whether you emailed your congressional representative our pre-written letter, told us who/what you were advocating for on our race bibs, participated in the virtual 5k, raised funds, shared your story, shared our Batten facts, and/or ordered a T-shirt, we are extremely grateful for you.

Thanks to you, we can provide five travel stipends for our community to attend Rare Disease Week on Capitol Hill, continue to support Batten families through grants, and much more.

From the bottom of our hearts, THANK YOU!

View this year’s fundraising teams and donors by clicking the button below.

Today is July 1, which means IT IS ANNUAL FAMILY CONFERENCE MONTH!

Registration is still open! The deadline to purchase meals, which includes breakfast on Friday, Saturday, and Sunday, lunch on Friday and Saturday, and Saturday’s dinner at the Dinner Dance, is Tuesday, July 2.

Registration for offsite conference events such as the SIBs’ trips to the City Museum and Science Center and the comedy club trip for the Life Goes On program is closed.

We have announced over 20 confirmed speakers for the 2024 Annual Family Conference!

From researchers to music therapists to support experts, this year’s Annual Family Conference in St. Louis is loaded with various presentations that can assist Batten community members along their Batten journeys.

At this year’s Annual Family Conference, researchers from the University of Rochester Batten Center (URBC) and the Foxe Lab (also at the University of Rochester) will arrive early to provide opportunities for early research participation before the conference. Early research visits will be for the URBC Natural History Study and the Foxe Lab EEG auditory perception study. UR study teams will cover the cost of a hotel room for families for Wednesday, July 10 if they schedule a research visit with the URBC and/or the Foxe lab for Thursday, July 11. The research teams will also stay at the conference hotel until the afternoon on Sunday, July 14 to accommodate families, and will see subjects on July 12 and 13.

Please contact Amy Vierhile at (585) 275-4762 or batten@urmc.rochester.edu to hear more about the research projects and to make an appointment for your child to be seen.

Whether it’s an urgent need, joy along your Batten disease journey, or sending equipment to another family in need, BDSRA is here to support you through our family grants.

The EveryLife Foundation for Rare Diseases offers financial resources and medical resources for the rare disease community.

Learn more by clicking here.

The BDSRA Foundation Family Register is a vital tool that enables us to keep you informed of ongoing Batten disease research, including future clinical research and natural history opportunities.

The information collected in this form is kept STRICTLY CONFIDENTIAL. Your involvement in this survey is entirely voluntary, and you may request to be removed from the list at any time. The form takes just a few minutes to complete and can be accessed by clicking the button below.

Click the links below to read the letters BDSRA signed on to in June:

• Creating Hope Reauthorization Act of 2024
• FY25 Non-Defense Discretionary Letter
• FY25 Epilepsy Appropriations Organizational Support Letter

We thank U.S. Congressman Aaron Bean (FL) for federally recognizing Batten Disease Awareness Day. Last year, Congressman Bean introduced a resolution recognizing every June 9 as Batten Disease Awareness Day. We also thank BDSRA Board Member Donna Fogle for her continued advocacy!

The Timmerman, Thoene, and Stecker families secured Batten Disease Awareness Day proclamations in their respective states of South Carolina, Nebraska, and Virginia.

Read about their Batten journeys and the process of getting these proclamations by clicking the button below.

From the EveryLife Foundation for Rare Diseases: “On May 21, 2024, the EveryLife Foundation convened the 14th Scientific Workshop, focusing on Therapy Development for Small Populations: Evidence, Implications, & Policy in Characterizing Ultra-Rare. We were joined at the National Press Club by over 90 members of the rare disease community, including leaders in the patient advocacy space, experts from industry, and trailblazers across government agencies. Also, we supported over 190 members of the community in joining the workshop via livestream.”

WE’RE GETTING CLOSER!

Registration is still open for the Annual Family Conference in St. Louis. Registration for offsite events at the conference is closed. The deadline to purchase conference meals is Tuesday, July 2.

Click the button below for more information.

Stay tuned for more information on registration and party kits!

Want to see more content from BDSRA? Don’t miss out on upcoming events, information, campaigns, and community posts! Follow @BDSRA on Facebook, Instagram, LinkedIn, X, and YouTube to stay in the know on all things happening in our Batten Community!

Click below to follow all of our accounts: 

It’s time for research updates! BDSRA Foundation’s Head of Research & Medical Affairs Dr. Ineka Whiteman breaks down Batten disease clinical program updates, research news & opportunities, and resources in her monthly column.

This past month has been a flurry of activity as we have put the finishing touches on a host of science, clinical, and research activities for the conference.

The scientific and clinical program will feature in-person presentations from local and international researchers, interactive Ask-A-Doc sessions with Centers of Excellence Directors and senior clinicians, the latest clinical trial and pipeline updates, including a Q&A with our industry partners, concurrent sessions on “Behavior, Cognition, and Learning,” and “Palliative Care: Debunking the Stigmas,” and an “Ask Me Anything,” session with scientists who are excited to share a collection of laboratory gadgets and items for a true “hands-on” research experience.

Please also check out the “NCL Researchers Challenge” videos in the conference app. Global researchers will present their latest findings in three-minute presentations, and attendees may watch and vote for their favorites.

This year, we are excited to present several on-site research study opportunities for our families. We encourage registrants to check out the Research Study Information flyers here, and we warmly invite you to sign up for any studies that you and your family are interested in. You may sign up in advance or at the Research Study Registration table at the conference. Your participation is vital for advancing research as we all work together on the “Path to a Cure.”

During the Dinner Dance on Saturday evening, July 13, we’ll have special announcements you won’t want to miss!

I can’t wait to see so many of you in St. Louis!

Help Shape The Future Of Batten Disease Research – Community Survey Phase 2 Opening Soon

Last month, we were so encouraged by the response to Phase 1 of our Research Priority Setting project. Through this survey, we received more than 400 research questions that participants felt should be priorities for Batten disease researchers and research funders.

We have now collated a summarized list of popular research questions and will distribute a second survey in July. We’re asking stakeholders to choose the “Top 10” research questions important to YOU. Those rankings will determine the “Top Priority Research” questions that will help inform and drive research priorities and future investment in Batten disease.

Again, whether you’re a parent, clinician, researcher, industry representative, policy maker, educator, allied health, or support worker, we want input from all stakeholders.

Your role in the Batten disease community is crucial, and your response matters.

So please keep an eye out for the Phase 2 survey coming through to your inboxes and socials soon! And as always, thank you for your support and dedication to our shared mission.

Warm regards,

Remember those we have lost to Batten disease. We work daily to build a brighter future for families in their honor and memory.

Calen Stephen Collins | December 10, 2008 — June 14, 2024

Safwan Sarwer | August 9, 2005 — June 21, 2024

To have your loved one’s name placed in The Illuminator and read at the Celebration of Life at the Annual Family Conference in July, please email patrick@bdsrafoundation.org.

To view the list of recent donors, please click the button below!

From copy paper to personnel, $5 Fridays is designed to keep the office moving. The more $5 Friday donations BDSRA Foundation receives for operations, the more money BDSRA can invest in programs, research, and advocacy.

That’s the power of FIVE. 

Designed to give our community control over their stories, fundraising, and donations, our Fam Funds participation is growing!

• Tell your story
• Raise funds for BDSRA
• Choose where donations are directed
• Share with your community