March 2018                                                                                        Volume 29, Issue 2
Rare Disease Day Recap

The Batten Community was very busy on Rare Disease day! Families were raising awareness and meeting with elected officials to discuss issues important to our community! 

Click here to read about Batten families on Capitol Hill. Margie Frazier speaking at the NIH, and the Bowman Family at the Rare Disease Tree of Life Sculpture Dedication. 
BDSRA Open House

We are so thankful to everyone who made it out to our open house! We were able to meet our new neighbors the FAA and TSA, and welcome families, volunteers, and vendors to our new space.

Thank you, Dr. Emily de los Reyes, Lance, and the Riddle, Graham, and Diaz families for stopping by!

A special shout out to Becky from the Container Store for helping us get a great deal on the perfect office furniture.

February Funding Partners!

The often grey and cold winter month of February brings with it two reasons to feel warm and grateful. The Froio and Ferrandino families are deeply appreciated members of the BDSRA community. Both have lost beloved children far too soon in life and both continue to create legacy for them by giving back. As funding partners of the BDSRA, they contribute to further scientific research and ensure the support and education they received is available for other families in the future.

Continue reading about the Froio and Ferrandino Casio Nights here.
Volunteer Spotlight: Nationwide Insurance

BDSRA is grateful for the energetic volunteers and supporters who do things for our community throughout the year. A group of colleagues from Nationwide Insurance in Columbus, Ohio has been among those willing to jump in and say yes to helping. 

Continue reading about the volunteers from Nationwide here.
2018 Family Conference

This year, the Batten Disease Support and Research Association (BDSRA) will welcome over 400 family members, researchers, clinicians and industry partners to Nashville, TN to learn, reconnect and most importantly, make wonderful family memories. We are so excited year after year to bring these very special families together from all over the world, whose children have a life-limiting rare disease.

We are excited to announce that registration is now live for the  2018 BDSRA Annual Conference !

To start your registration click here!

Follow our Conference Page and  Facebook page  for conference updates.

We can't wait to see you all in Nashville!
BDSRA is now a part of BioOhio, a statewide biotech consortium!

From their website:

"BioOhio is a member-guided service that connects and supports Ohio's bioscience community through networking, advocacy, events, talent, information, and cost savings.


BioOhio represents over 300 members that employ over 100,000 Ohioans - from Ohio's largest employers to emerging start-ups, schools & universities, research institutions, students, and individuals.


BioOhio is the lead organization for the bioscience community and the Ohio affiliate for global bioscience associations AdvaMed, BIO, MDMA and PhRMA."


We are excited to be representing the patient voice to this important organization!

Research Announcement

Good news from Abeona Therapeutics!

" The pre-clinical ABO-202, investigational AAV-delivered gene transfer approach for CLN1 disease received further acknowledgement this week by being granted the Rare Pediatric Disease Designation from the FDA. To be considered a rare pediatric disease it must affect fewer than 200,000 individuals in the U.S. primarily aged from birth to 18 years. This designation is, therefore, recognition for the impact on children and need for the development of treatment. Our gratitude to  BDSRA  and  Taylor's Tale: Fighting Batten Disease  for their involvement in helping to demonstrate the pediatric nature of this progressive and ultimately fatal disease."

We are grateful for this collaborative effort in CLN1. Special thank you to Steven Gray, and Sharon King and Laura Edwards of Taylor's Tale. We look forward to continued progress toward clinical trials!
Resource Corner: Home Renovation Tips

This month we have a guest blog from Rosemarie Rossetti , author of the Universal Design Toolkit. Last fall Rosemarie joined us for an Ask an Expert chat on Universal Design, you can download the transcriphere , this month she shares with us a few home renovation tips. 

"Here are a couple of tips that will help you to make your home more wheelchair accessible. 

1. As you are aiding your child getting into and out of your home, consider these features. The entrance should be step free, have a door that is wide enough to enter (36"), and have a low door threshold (< ½ inch). If a ramp is needed, create a slope that is no steeper than a 1:12. That is for every inch of rise you need twelve inches of ramp. I prefer an easier 1:20 slope since I use a wheelchair for mobility and push myself.
2. To facilitate showering, I recommend a curbless shower that is large enough to accommodate your child in a shower chair, or if they are able to transfer, have a fixed shower chair mounted on a wall. My master bathroom shower is 4' X 7' with a 36" wide entry. It has plenty of room for me to wheel in and transfer to the shower chair on the wall. There is room for someone to help me if I need help later in life. I recommend a channel drain instead of a center drain. Grab bars should be located in the shower for safety.

For more home renovation tips check out my article  9 Ways to Make a Home Wheelchair Accessible  "

On the Road with BDSRA in April and May 

In April and May BDSRA will be attending and speaking at many events and conferences
  • speaking to the CNF Corporate Advisory Board at the the American Academy of Neurology Meeting in Los Angeles, CA
  • in Winnipeg Canada discussing Batten disease with educators, physicians, social workers, and government officials and attending the Laps 4 Life race
  • attending the 2nd Annual Gene Therapy for Rare Disease conference  in Boston, MA
  • speaking at the BioMarin Non-Profit Partners Forum in San Francisco, CA

In Loving Memory 

Remember with us those we have lost from Batten disease.  It's in their honor and memory that we work every day to build a brighter future for families.

Thank You BDSRA Community of Donors! 

Thank you to the donors last month who gave so generously to honor and in memory of loved ones and our community as a whole. We want to acknowledge you for your contributions. They allow us to keep serving families and advancing the science of a meaningful treatment. Your dollars and support have helped create the leading patient organization in the Batten disease community, and we are dedicated to continue that legacy of children and families. 

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