Lots of virtual events are on the horizon! View the list below and scroll down to the “Upcoming Events” section to learn more about each one.

• Saturday, February 1 – Deadline to apply for a Rare Disease Week travel stipend
• Monday, February 3 – Deadline to order a Valentine’s Day Party Kit (while supplies last)
• Tuesday, February 11 – Valentine’s Day Party
• Sunday, February 16 – Grief Chat
• February 24-28 – Rare Disease Week on Capitol Hill & FDA-NIH Rare Disease Day
• Early March – Virtual SIBs Event (more details to come soon)

Batten families now have the opportunity to help raise funds for the BDSRA Foundation and awareness for Batten disease through their own fundraisers!

✅ Raise awareness

✅ Raise funds

✅ Tell your story

By signing up for Fam Funds you can accomplish all three and direct donations to a BDSRA mission area that means the most to your family.

If you sign up for Fam Funds, you will be in communication with Beth Fries!

BDSRA has contracted Beth, a Batten mother to her two CLN3-affected daughters, to lead development projects for BDSRA, including the re-launch of our Fam Funds initiative! Beth will be the main contact for Fam Funds, helping families launch their own fundraisers to help raise funds for BDSRA.

Gretchen brings a depth of experience and compassion to her new role as a member of the Board of Directors at BDSRA.

For over three decades, her career in biotech and pharma focused on global healthcare marketing and market development strategies. She found her work most rewarding in her regular collaboration with medical experts, scientists, patients, and their families, to drive earlier diagnoses, provide optimal new treatments, and expand the reach of those treatments to as many patients as possible in areas of neurology, immunology and rare pediatric diseases.

At BioMarin, as Director of Global Product Strategy for Batten disease and Brineura, she developed a particular passion for supporting efforts in the Batten community to build awareness, further research, and most importantly, help families with children or siblings afflicted.

Newly retired, she is delighted to have the opportunity to collaborate with others focused on improving lives affected by this terrible disease. She is looking forward to bringing her expertise in marketing and communications to the BDSRA family.

Gretchen has lived on the East Coast, and Midwest, and resides in Northern California with her husband, Larry, and their newly adopted 11-year-old husky, Boris.

It’s time for the first Batten disease research updates of 2025! BDSRA’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.

Her latest column features two Research Highlights she was involved with.

• The first highlight covers a new study led by Prof. Jonathan Cooper, Dr. Ewa Ziolkowska, and Matt Jansen at Washington University in St. Louis that may have uncovered why individuals with Batten disease often suffer from severe gastrointestinal issues.
• The second highlight features new research on speech and language in CLN2 and CLN3 disease led by Prof. Angela Morgan and PhD candidate Lottie Morison at the Murdoch Children’s Research Institute (MCRI) in Melbourne, Australia.

What should the theme for the 2025 BDSRA Annual Family Conference in Lincoln, Nebraska be? Let us know your thoughts by clicking the following link and emailing us your idea(s): bdsramarketing@gmail.com.

Save the dates for this year’s conference in Lincoln, Nebraska from July 11-13, with pre-conference activities occurring in the evening on Thursday, July 10.

Click below to read the letters BDSRA signed on to during November, December, and January:

• ABC Sign-on Letter for BRAIN Initiative and All of Us Research Funding
• Letter to Centers for Medicare & Medicaid Services (CMS) requesting guidance to states on Medicaid coverage for pediatric rare diseases testing under the Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program
• Rare Disease Community Letter to President Trump

“Uplifting Experiences can take on many different forms, but the top priority is always harnessing the power of sport to inspire hope and joy in the lives of people impacted by rare diseases.

The objective of each event is to provide an opportunity for members of the local rare disease community and athletes to connect. Uplifting Experiences is centered on affording people impacted by rare diseases a unique and memorable experience, while simultaneously allowing athletes to directly connect with the people impacted by a cause they support.”

Click the button below to view the Uplifting Experiences upcoming events list to learn more and register.

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.

This is a special chance for parents, siblings, and their loved one(s) with Batten to come together for a night of joy, creativity, and community.

💐 What’s in store?

• A story to enjoy together
• A fun  craft activity to spark creativity (don’t worry, we’ve got the supplies covered!)

✨ FREE Party Kits for U.S. and Canadian families! ✨

We’re offering FREE party kits, filled with everything you’ll need for the craft, plus the book—but hurry! The deadline to order your kit is Monday, February 3, at 11:59 PM EST (or while supplies last), so don’t wait!

Grief Chats, as part of BDSRA’s Life Goes On program, are a safe space for parents who have lost a child to Batten disease to connect, share, and heal together. Take this step to support yourself and your journey through grief.

If you didn’t register for a Grief Chat in 2024, please register and you will receive the Zoom link and reminder emails for all Grief Chats moving forward.

BDSRA is offering $1,000 travel stipends to help YOU attend Rare Disease Week in Washington, D.C., and FDA-NIH Rare Disease Day from February 24-28. This is your chance to meet with lawmakers and fellow advocates and amplify the voices of those affected by Batten disease and rare disease. Together, we can create change and raise awareness.

Apply by TOMORROW, February 1.

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: 

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

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

Sofia Dobos

Kelsie Hardin

Baran Tan

Ada Tunceren

Are you planning a birthday fundraiser for BDSRA this year? Now is the time to start planning, and we are here to help!

Facebook is no longer paying the credit card fees for nonprofits and has turned over the program to another entity to manage. BDSRA is not currently eligible for their program, but we are working on it.

The good news is that BDSRA can make a custom link and QR code for you to create a birthday fundraiser that directly comes to us! Creating a Fam Fund is another great way to raise funds in celebration of your birthday, and we can do all the legwork for you.

If you are interested in setting up a Fam Fund for a birthday fundraiser or a stand-alone birthday fundraiser this year, please contact Beth Fries at Beth@BDSRAfoundation.org to get started.

Thank you for investing in our mission. We exist to provide support, research, and advocacy for families with all forms of Batten disease. We want to acknowledge the donors who gave so generously last month to our work.

Together, we are Batten Advocates for a Cure.

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. 

We connect your donation to Support, Research, and Advocacy for families of all CLN types.