February 2021                                                                          Volume 32, Issue 2

Happy Rare Disease Day!!

Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives.

Building awareness of rare diseases is so important because 1 in 20 people across the globe will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed.

Here are a few Rare Disease statistics:

• Any disease, disorder, illness or condition affecting fewer than 200,000 people in the United States is considered rare.
• There are approximately 7,000 rare disease
• More than 90% of rare diseases are without an FDA approved treatment
• The total number of Americans living with a rare disease is estimated at between 25-30 million

• 72% of rare diseases are genetic whilst others are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

• 70% of those genetic rare diseases start in childhood.

Resource Corner: The Rhythm Tree

The Rhythm Tree is an organization dedicated to providing resources (including videos) on using music to help children with special needs.

Here is an excerpt from their website

"Do you have a loved one who lights up when they hear music? Are you looking for something that will increase their quality of life and help them learn, grow and express themselves? My name is Ryan Judd and I help improve the lives and abilities of individuals with special needs by creating a musical, fun and motivating atmosphere for them to thrive in.

I have a master's degree in psychology and music therapy from one of the top contemplative education schools in the country. I am a board-certified music therapist and have been specializing in helping people with special needs for more than 20 years. The results I've achieved from integrating music and therapy are powerful and my work has even been featured on ABC World News Tonight and other national news outlets.

My mission is to elevate individuals with special needs to new heights developmentally, emotionally and expressively."

Check out this resource here

Upcoming Events for Batten Families 

Research Updates

WORLDSymposium 

February 8-12 basic, translational and clinical researchers, patient advocacy groups, clinicians, and all others who are interested in learning more about the latest discoveries related to lysosomal diseases and the clinical investigation of these advances gathered virtually for the 17th Annual WORLDSymposium.

BDSRA took this opportunity to educate the community about the Batten patient experience, connect with researchers and share ideas with other patient advocacy organizations. 

During the conference there were two presentations focused on Batten disease and many posters, a list of titles and authors can be found here. 

This month we have new Facebook fundraisers organized by:

• Joseph Anthony Abrams
• Heath J. Alston
• Jenise Finfrock
• Veronica Sbrocco-Rowley

We are so excited each day to log in and see the list of your names growing. Thank you for sharing and supporting our mission on social media! You can visit each fundraiser by clicking on the names above.

Thank You BDSRA Community of Donors!

Your gift makes all the difference in the lives of families. 

Batten Disease Support and Research Association

(614) 973-6013 | info@bdsra.org | www.bdsra.org

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