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March 2019                                                                                        Volume 30, Issue 3
2019 BDSRA Annual Family Conference 


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

The BDSRA's signature event each year is our family conference. Last year over 450 family members, children, and researchers attended to learn about patient care, education, and the latest research. As in years past, you'll have access to experts sharing research posters and helping to answer questions, connect with other parents, and attend sessions while medical care is provided for your child, and of course, the SIB program's outings and sessions are always great fun!

The conference will be held at the Renaissance Denver Stapleton Hotel. You can learn more about hotel reservation here. 

Because of forward-thinking and generous donors who lost their children to Batten disease, each year, there is a limited amount of stipend funding available for families who need assistance to attend the annual BDSRA Conference. You can apply for a stipend here.

You can read about the fun SIBs outings here!

If you, your employer, a local business, or a friend is interested in helping to fund the conference please visit our sponsorship page.
Resource Corner: Miracle Flights
 
Miracle Flights provides individuals and families free medical flights to distant, specialized care and valuable second opinions. They have #acurefordistance. To learn more or to request assistance with a flight, please visit miracleflights.org or call 1-800-359-1711.

- Miracle flights will fly individuals and families to treatment, second opinions, follow-up visits and clinical trials from the U.S. to U.S.-based treatment centers. They also fly people to retrieve/train service dogs.
- Experience: They are a nonprofit in operation for 33 years.
- Reach: Primarily rare disease focused, they are not disease specific.
- Age: All ages - children and adults
- Passengers: They will coordinate and book flights, free of charge, through commercial airline partners for a sick child and both parents/guardians or a sick adult and 1 caregiver.
-Mileage: Distance is never an issue and there is no limit to the number of times a family or individual can request a flight.
-Speed/Accessibility: They only need two weeks notice before a medical appointment (though they understand that urgent flights are at times necessary).
-What to do: To request a flight or learn more, contact the flight department via email flightspecialist@miracleflights.org or by calling 800-359-1711.

Rare Disease Day Recap


BDSRA joined over 800 other rare disease advocates who traveled from 49 states plus the District of Columbia to Rare Disease Week on Capitol Hill last month. 

Rare Disease Week included a Legislative Conference at the Ronald Reagan Building and International Trade Center, meetings with members of congress, time to network with other advocates and a Rare Disease Caucus Briefing. 

You can learn more about the 2019 activities here. 

Information about Rare Disease Week 2020 can be found here. 
Fundraising Highlight 
In February, BDSRA attended the 9th Annual Melissa Froio Foundation Monte Carlo night in Berlin NJ.  More than $18,000 was raised for the Batten Disease Support and Research Association and St. John of God Community Services. 

Over 300 people enjoyed an evening of dinner and casino games.  The local community donated over 40 raffle baskets and 3 grand prizes.  Thank you to everyone who supported the Froio family this year! 
Recent Fundraising Events



This month we have new Facebook fundraisers organized by:
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!
In Loving Memory 


Remember with us those we have lost to 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. 

View recent donor gifts
 
 
Your gift makes all the difference in the lives of families. 
Batten Disease Support and Research Association | (614) 973-6013 | i nfo@bdsra.org | w ww.bdsra.org
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