January 2019                                                                                        Volume 30, Issue 1
Families Giving Back

Giving back is one thing that we know Batten families do whenever they can, and Heather Dainiak and Katie Ferrandino are two moms who have found a very special way to do so.  Their families were both granted Make A Wish trips, and now they now volunteer as "Wish Granters" at for their local chapters.  We asked them to share some thoughts about giving back.

Heather: "I volunteer at Make a Wish because they are the kind of folks I want to be around. They inspire me and put my mind in a better place.  My question to you is did you contact your MAW in your state and get a wish for your child? Not only does it bring joy to your child who deserves this wish but it can bring a little joy and happiness toward your whole family during a hard time in our lives! Creating amazing memories whatever the wish maybe. Take advantage of this wish. Beyond your wish the organization often has other events your family can go to through out the year. Here is a photo of my son Nicholas receiving his wish.  A special service dog named Shane. If you have any questions or need help contacting your local MAW office- please reach out to me at heather.dainiak@nh.wish.org and I am willing to help
in anyway I am able." 

Katie: "
The power of a wish provides hope and strength for
children struggling with life
threatening illnesses and their families. As a prior wish family I truly understand the power of a wish and the impact it can have on these children. I volunteer as a wish grantor for Make A Wish because of our incredible wish experience. Drew's wish was to go to Disney World and we were able to escape the reality of his diagnosis, if only for a week. Make A Wish took care of every detail and provided memories for a lifetime."

American Epilepsy Society 

In December BDSRA attended the AES Meeting in New Orleans. As the largest gathering on epilepsy in the world, the American Epilepsy Society's Annual Meeting is the event for epilepsy professionals in academia, clinical practice, industry, and advocacy. 

We had a great time meeting with neurologists, nurses, researchers and industry. Meetings like this are an important way for us to spread awareness about Batten disease. 

You can take a look at the agenda and the poster abstracts at the links below, including a few posters focused on Batten disease. 

Study Announcement: Symptoms and Daily Function

Researchers at the University of Rochester (Rochester NY USA) and Cardiff University (Cardiff, Wales, United Kingdom) are conducting a research study of children with genetic disorders that can result in autism, developmental and intellectual disability, seizures, challenging behaviors, movement disorders, vision/hearing loss, or any combination of these problems. 

Parents/caregivers will complete an anonymous, online survey about the symptoms and daily function of the affected individual. The goals of the study are to learn more about a variety of disorders, and expand access to research by using an online survey that can be completed from any place in the world.

You can see the study flyer  here.

To learn more about the study, or participate, please visit the study web page at:  http://j.mp/2M00JC8

You can also contact the study team directly with questions:
email: DBDStudy@Cardiff.ac.uk 

Phone: (585) 275-9330 [secure messages can be left at this number]
NORD Issues New Rare Disease DayⓇ Rallying Cry:
Show Your Stripes™!
The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced a new campaign for Rare Disease Day centering on three simple words: Show Your Stripes, with a call to action for people to literally and figuratively "show their stripes" in support of rare diseases leading up to and on Rare Disease Day, which will be observed on February 28th this year.  

Staff Update

We said goodbye to Christina Clark, Director of Development, in December and wish her well in all her new endeavors. 

For questions about fundraising and donations please reach out to Noreen Murphy at nmurphy@bdsra.org
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
Batten Disease Support and Research Association | (614) 973-6013 | i nfo@bdsra.org | w ww.bdsra.org