Advocacy

Batten Disease Q&A | Global Genes RARE Advocacy Summit Summary

KANSAS CITY, Mo. – The Batten Disease Support, Research, and [...]

By Patrick Kotnik|2024-10-02T14:02:53-04:00October 2nd, 2024|Advocacy, Latest News|Comments Off

WE'RE GETTING CLOSER TO OUR FUNDRAISING GOAL! WE'VE RAISED [...]

By Patrick Kotnik|2024-06-09T11:17:24-04:00June 9th, 2024|Advocacy, Latest News|Comments Off

International Batten Disease Awareness Day is Sunday, June 9! [...]

By Patrick Kotnik|2024-06-09T11:15:05-04:00June 6th, 2024|Advocacy, Latest News|Comments Off

Batten Research Survey Deadline Extended In partnership with Kennedy [...]

By Patrick Kotnik|2024-05-24T11:35:37-04:00May 24th, 2024|Advocacy, Latest News, Research News|Comments Off

If you haven't purchased your International Batten Disease Awareness [...]

By Patrick Kotnik|2024-05-09T17:06:34-04:00May 10th, 2024|Advocacy, Latest News|Comments Off

In his own words, BDSRA Foundation Database Manager Noah Siedman [...]

By Patrick Kotnik|2024-05-02T15:46:53-04:00May 2nd, 2024|Advocacy, Latest News|Comments Off

Eight-year-old Kennedy Reed’s simple love for drawing and coloring has [...]

By Patrick Kotnik|2024-04-30T08:16:22-04:00April 30th, 2024|Advocacy, Latest News|Comments Off

It's that time of year again! For this year's [...]

By Patrick Kotnik|2024-04-19T09:05:20-04:00April 19th, 2024|Advocacy, Latest News|Comments Off

BDSRA Foundation Database Manager Noah Siedman spoke at the [...]

By Patrick Kotnik|2024-04-17T17:46:26-04:00April 17th, 2024|Advocacy, Latest News|Comments Off

Hello Everyone, April showers bring May flowers, but here [...]

By Patrick Kotnik|2024-04-02T15:52:49-04:00April 2nd, 2024|Advocacy, Latest News|Comments Off