BDSRA Foundation - Invidious

BDSRA Foundation

The Batten Disease Support, Research, and Advocacy Foundation is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. Founded in 1987, by parents seeking to build a network for those diagnosed with Batten disease, BDSRA is now the largest support and research organization dedicated to Batten disease in North America. BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.

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4:10

Project for Awesome 2026: BDSRA Foundation

BDSRA Foundation

Shared 2 weeks ago

201 views

1:41

Batten Disease: Why the Thoene Family Fundraises for BDSRA

BDSRA Foundation

Shared 2 months ago

76 views

2:04

Batten Disease: Why NOW is the time to donate to the BDSRA Foundation

BDSRA Foundation

Shared 2 months ago

38 views

5:46

Saturday Night Parade | 2025 BDSRA Annual Family Conference for Batten Disease

BDSRA Foundation

Shared 4 months ago

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52:37

The Power of Music Therapy in Batten Disease Care | 2025 BDSRA Annual Family Conference

BDSRA Foundation

Shared 4 months ago

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47:48

Ask Me Anything with Prof. Jonathan Cooper | 2025 BDSRA Annual Family Conference for Batten Disease

BDSRA Foundation

Shared 4 months ago

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1:26:15

Behavior, Cognition, & Learning | 2025 BDSRA Annual Family Conference for Batten Disease

BDSRA Foundation

Shared 4 months ago

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1:08:47

A Discussion of Gene-Related Topics in Batten Disease | 2025 BDSRA Annual Family Conference

BDSRA Foundation

Shared 4 months ago

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54:52

Understanding Tissue Donation | 2025 BDSRA Annual Family Conference for Batten Disease

BDSRA Foundation

Shared 4 months ago

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1:01:19

A Quality of Life Framework for Families on the Batten Journey | 2025 BDSRA Annual Family Conference

BDSRA Foundation

Shared 4 months ago

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1:20:14

Estate Planning with Kim Zellmer | 2025 BDSRA Annual Family Conference for Batten Disease

BDSRA Foundation

Shared 4 months ago

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2:59:58

A Deep Dive into Batten Disease: From Bench to Bedside | 2025 BDSRA Annual Family Conference

BDSRA Foundation

Shared 4 months ago

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38:28

Bill Busch Keynote Address | 2025 BDSRA Annual Family Conference for Batten Disease

BDSRA Foundation

Shared 4 months ago

46 views

1:41

2025 BDSRA Annual Family Conference | Pre-Conference Highlights

BDSRA Foundation

Shared 5 months ago

56 views

0:54

Setting Up The BDSRA Foundation Memorial

BDSRA Foundation

Shared 7 months ago

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0:44

2025 BDSRA Annual Family Conference | Thursday Highlights

BDSRA Foundation

Shared 7 months ago

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1:22

BDGRI Grant Recipient: Wendy Heywood, PhD

BDSRA Foundation

Shared 10 months ago

59 views

2:02

BDGRI Grant Recipient: Professor Jonathan Cooper, PhD and Ewa Ziółkowska, PhD

BDSRA Foundation

Shared 10 months ago

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3:48

RARE DISEASE WEEK 2025 RECAP

BDSRA Foundation

Shared 11 months ago

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3:09

TUTORIAL | 2025 Rare Disease Week Module

BDSRA Foundation

Shared 11 months ago

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21:35

Fam Funds Interest Meeting

BDSRA Foundation

Shared 1 year ago

67 views

1:26

An EXCITING Future for Batten Disease Research

BDSRA Foundation

Shared 1 year ago

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1:27

Your Gift to BDSRA Can Be a Game-Changer

BDSRA Foundation

Shared 1 year ago

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1:26

Your Gifts to BDSRA Provide Critical Support

BDSRA Foundation

Shared 1 year ago

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1:22

Your Gifts To BDSRA Provide A Community For Batten Families

BDSRA Foundation

Shared 1 year ago

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1:24

How Your Gifts Impact the BDSRA Annual Family Conference

BDSRA Foundation

Shared 1 year ago

64 views

1:13:55

Behavior, Cognition & Learning | 2024 BDSRA Annual Family Conference

BDSRA Foundation

Shared 1 year ago

188 views

2:09

BDSRA MEMORIAL UPDATE

BDSRA Foundation

Shared 1 year ago

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1:37

Batten Disease | Global Genes RARE Advocacy Summit Summary

BDSRA Foundation

Shared 1 year ago

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1:27

Toolbox Tuesday | Newborn Screening & Batten Disease

BDSRA Foundation

Shared 1 year ago

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1:16

Your Gifts To BDSRA Make A Real Difference

BDSRA Foundation

Shared 1 year ago

130 views

1:13

Here are the facts about Newborn Screening

BDSRA Foundation

Shared 1 year ago

11 views

2:35:58

Batten Disease Science & Research Session | 2024 BDSRA Annual Family Conference

BDSRA Foundation

Shared 1 year ago

197 views

1:09:52

Case Management 101 with Dr. Joseph Vigil | 2024 BDSRA Annual Family Conference

BDSRA Foundation

Shared 1 year ago

36 views

1:03:40

Palliative Care: Debunking the Stigmas | 2024 BDSRA Annual Family Conference

BDSRA Foundation

Shared 1 year ago

39 views

1:11:05

Managing Caregiving Stress/Burnout with Dr. Joseph Vigil | 2024 BDSRA Annual Family Conference

BDSRA Foundation

Shared 1 year ago

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54:55

Dinner Dance: IMPORTANT Batten Disease & BDSRA Announcements | 2024 BDSRA Annual Family Conference

BDSRA Foundation

Shared 1 year ago

63 views

34:37

Celebration of Life | 2024 BDSRA Annual Family Conference

BDSRA Foundation

Shared 1 year ago

37 views

2:11

MAJOR Batten Disease Clinical News | Hear from BDSRA's Dr. Ineka Whiteman

BDSRA Foundation

Shared 1 year ago

103 views

5:24

TUTORIAL | 2024 Annual Family Conference App

BDSRA Foundation

Shared 1 year ago

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3:23

TUTORIAL | Batten Disease Awareness Day Advocacy Module

BDSRA Foundation

Shared 1 year ago

27 views

2:47

Batten Disease | RARE Drug Development Symposium Summary

BDSRA Foundation

Shared 1 year ago

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1:03

Meet The Winner of the 2024 International Batten Disease Awareness Day T-Shirt Design Contest

BDSRA Foundation

Shared 1 year ago

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9:20

TUTORIAL | 2024 International Batten Disease Awareness Day Fundraising

BDSRA Foundation

Shared 1 year ago

125 views

5:28

Batten Disease | Rare Disease Day at FDA & Industry Partner Meeting Summary

BDSRA Foundation

Shared 1 year ago

44 views

3:35

TUTORIAL | Advocate for the Batten Disease Community During Rare Disease Week

BDSRA Foundation

Shared 1 year ago

315 views

2:26

TUTORIAL | NEW Grief Chat Sign-Up Form

BDSRA Foundation

Shared 2 years ago

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1:30

Important Information For Batten Disease Families | Family Register

BDSRA Foundation

Shared 2 years ago

114 views

1:04

My One-Word Batten Disease Journey | John & Carol Patterson

BDSRA Foundation

Shared 2 years ago

260 views

0:59

My One-Word Batten Disease Journey | Tracy VanHoutan

BDSRA Foundation

Shared 2 years ago

44 views

1:07:09

2023 Batten Disease Research in Review Webinar

BDSRA Foundation

Shared 2 years ago

174 views

1:56

Batten Mothers Describe Their Journeys with Batten Disease in One Word

BDSRA Foundation

Shared 2 years ago

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0:59

Your Gifts to BDSRA Help Support Batten Families

BDSRA Foundation

Shared 2 years ago

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56:28

REGENXBIO Webinar | BDSRA Foundation

BDSRA Foundation

Shared 2 years ago

211 views

1:29

Give to BDSRA Foundation This Giving Tuesday

BDSRA Foundation

Shared 2 years ago

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0:46

BDSRA Staff Thankfulness 2023 | Amy Fenton Parker

BDSRA Foundation

Shared 2 years ago

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0:58

BDSRA Staff Thankfulness 2023 | Dr. Ineka Whiteman

BDSRA Foundation

Shared 2 years ago

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0:51

BDSRA Staff Thankfulness 2023 | Patrick Kotnik

BDSRA Foundation

Shared 2 years ago

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0:38

BDSRA Staff Thankfulness 2023 | Noah Siedman

BDSRA Foundation

Shared 2 years ago

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0:38

BDSRA Staff Thankfulness 2023 | Linda Barkhurst

BDSRA Foundation

Shared 2 years ago

47 views