IT’S RARE DISEASE DAY! 🦓 Here’s what we got going on

THERE’S LOTS GOING ON!

TODAY’S Nationwide Panda Express Fundraiser
FINAL DAY to contact your reps using our Advocacy Module
A clinical update
Rare Disease Week highlights & reports
A SIBs event TOMORROW (Saturday)

Read below to catch up on the latest news and events and what you can do to advocate for the Batten disease community.

BIG FUNDRAISER TODAY!

Support BDSRA’s mission and help families affected by Batten disease by ordering Panda Express online or in the app and applying code 9001947 in the fundraiser code box during checkout – 28% of sales nationwide will be donated to BDSRA.

This fundraiser applies to ONLINE ORDERS ONLY. You must enter the code above during online checkout.

PLEASE SHARE TO SPREAD THE WORD! Learn more by clicking below!

Learn More

How YOU Can Advocate

Today is the final day you can utilize our module to quickly send a pre-written letter to your congressional representatives urging them to prevent the proposed cuts to Medicaid, further cuts to federal health agencies and funding, and to support the Rare Pediatric Disease Priority Review Voucher (PRV) Program.

Take action today and advocate for the Batten disease and rare disease communities.

Advocate Today

Tern Therapeutics Gives CLN2 Batten Disease Update

Tern Therapeutics advances pipeline and presents positive clinical data for TTX-381 and TTX-181 gene therapies for CLN2 Batten disease at the 21st Annual WORLDSymposium.

Read the community letter from Tern Therapeutics for details by clicking below.

Read the Community Letter

Rare Disease Week Highlights & Reports

The Batten disease community was represented at Rare Disease Week at Capitol Hill in Washington, D.C. this week by BDSRA President & CEO Amy Fenton Parker, Head of Research & Medical Affairs Dr. Ineka Whiteman, and Batten grandfather Mitch Larson.

Amy and Ineka visited the Kennedy Krieger Institute on Monday, one of the Batten Disease Clinical Centers of Excellence.

From cutting-edge research to compassionate, family-centered care, the Kennedy Krieger team is truly leading the way in advancing standards of care, and clinical research, and supporting the U.S. and global Batten disease community. A heartfelt thank you to Center Director Dr. Erika Augustine, Dr. Aaron Hauptman, Dr. Heather Brown, Dr. Jeff Doyle, and Nadia Moore for hosting! We are grateful for your unwavering commitment and collaboration.

TUESDAY RECAP

Batten grandfather Mitch Larson breaks down Tuesday’s activities in Washington D.C. ahead of Wednesday’s meetings with legislators and their staffers. Mitch was a recipient of a grant from BDSRA to attend this week’s activities.

WEDNESDAY RECAP

Dr. Ineka Whiteman made the trip to D.C. all the way from Australia! In an update from Wednesday, she details the day’s meetings on Capitol Hill with legislators and their staffers.

SIBs Event TOMORROW

BDSRA’s SIBs program is hosting its Mid-Season Social on Zoom at 1 PM EST this Saturday! This is an opportunity for Batten siblings to reconnect with fellow SIBs and for any siblings new to the program to introduce themselves!

This event is for BATTEN SIBLINGS ONLY. A Zoom link will be emailed to you after you register.