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December 2017 Volume 28, Issue 9
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Annual Fund 2017
Your contributions during annual fund sustain us year-round so we can be on the other end of the line when a family member, researcher or professional needs support, education or counsel. We are excited to build on the progress made in 2017 and create new possibilities in the lives of the children we serve.
"The first year I relied heavily on the staff at BDSRA. Since our first conference I have created a bond with the community of Batten families who have changed my life. Without BDSRA there is no 'us'. It doesn't work without them supporting us individually."
- Stacey Lyons Hiltman (Nathan's mom)
With all that we've accomplished together in 2017, we have one accomplishment not yet met!
Today, your gift can make all the difference for families in 2018.
Please include us in your end of year charitable contributions and consider a generous gift to BDSRA at
www.bdsra.org/donate
.
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Fundraisers and Funding Partners
We are able to serve in critical areas because of many people throughout the year. We are so grateful for the time put in by the leaders of these events and their family members, friends and co-workers that support them. Together they form a very important part of the BDSRA community.
Funding Partners and volunteers generate more than the vital financial contributions we need to continue serving families and working to further treatment of all aspects and forms of this disease, they create the bonds and conversations that contribute to awareness and education.
I
n the past several months, we have had the gift of welcoming a new face to the B
DSRA volunteer community and the honor of adding 2017 to years of committed support from several long-time community members and funding partners. Please continue on to the full article to read about the Marathon for Batten, the Staten Island Bowl-a-thon, A Fifth Season and the Battling Batten 5K Run & Family Walk.
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Upcoming Events
We love to keep our calendar up-to-date, if there are other events coming up, please help us share
them with others by emailing them
[email protected]
. You never know who might be traveling near your city or would want to support in another way.
Two events are coming up in early 2018 from long-time fundraisers and donors to the BDSRA, the Ferrandino Family and the Froio Family. We invite you to support them in any way you can!
Saturday, February 3, 2018, Richboro, Pennsylvania
Organized by the Ferrandino Family in memory of their son Drew.
Saturday, February 24, 2018, Berlin, New Jersey
Organized by the Froio Family in memory of their daughter Melissa.
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Resource Corner
The Ketogenic Diet has been around for over 90 years and is used to treat epilepsy through a modified diet. Many patients who suffer from seizure diseases, including Batten disease, have found that the Ketogenic Diet helps to reduce the number of seizures and some become seizure free.
In 1993 Charlie Abraham developed difficult to control epilepsy at 11 months old and as a last resort, after experiencing multiple seizures a day while taking multiple daily medications, his parents turned to a Ketogenic Diet for help. The diet worked and Charlie became seizure-free within a month. In 1994 the Abraham's family started The Charlie Foundation for Ketogenic Therapies to provide information about diet therapies for people with epilepsy, other neurological disorders, and select cancers. The Charlie Foundation is now a global leader in promoting ketogenic therapies.
The Charlie Foundation's website provides background on the diet, recipes, families stories, a Keto Store, and many other resources for families. To learn more about the Charlie Foundation and the resources they provide go to www.charliefoundation.org.
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BDSRA Staff Remembers
Earlier this month BDSRA staff lit candles and gave thanks for the lives and legacy of those we have lost to Batten disease. We remember them very fondly as we carry out our work from day to day. We send our love and best wishes to our Batten community this holiday season.
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Dr. Kathy Swoboda from Massachusetts General Hospital discusses the important role of the patient community in instituting newborn screening for childhood diseases such as Batten disease.
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Batten Disease Scientific Conference
The 4th Batten Disease Scientific Conference organized by Heather and Chris Dainiak, founders of Our Promise to Nicholas, was held in Bethesda, MD Novermber 28th and 29th. This 2-day event to better understand progress in CLN1 an CLN2 disease featured speakers from all over the US engaged both in Batten research and in other lysosomal storage diseases. A special section of Day 1 was a discussion of recent efforts in newborn screening for Batten. The agenda for the meeting is linked
here.
BDSRA is proud to have helped sponsor the event and very grateful to the Dainiaks and organizer, Dr. Jill Wiemer of Sanford Research for their hard work.
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Holiday, Families and Grief
Batten families are keenly attuned to the sounds, sights and memories of their affected children when they were healthier and full of 'normal' energy during the holidays. Each December we our staff remembers bereaved families and those who feel the losses of Batten each day. One resource we suggest often is Compassionate Friends.
The Compassionate Friends was founded over 40 years ago when a chaplain at the Warwickshire Hospital in England brought together two sets of grieving parents and realized that the support they gave each other was better than anything he, as a chaplain, could ever say or provide. Meeting around a kitchen table, the Lawleys and the Hendersons were joined by a bereaved mother and the chaplain, Simon Stephens, and The Society of the Compassionate Friends was born. The Compassionate Friends jumped across the ocean and was established in the United States and incorporated in 1978 in Illinois.
Their story is very similar to BDSRA's beginning and underpinning of peer support and radical acceptance of whatever place families find themselves and their emotions. We offer this resource with our sincere hope that you gain comfort and sustenance from their years of service.
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Board Elections
BDSRA board elections were held in October 2017, and the board is happy to announce that after collecting fact sheets from the three who applied, they have decided to accept those very qualified applicants as the 2018 BDSRA board members. By doing so, BDSRA has saved approximately $400 in mailing and processing the ballots. We are excited to use that money to offer additional travel stipends for the 2018 Family Conference.
We welcome returning board members Mike Collins, Darlene Royalty and Donna Fogle. Chad Killen will join us for one year bringing the SIB voice to the board. Thank you for your dedication to BDSRA!
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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. This year we celebrate 30 years! Your dollars and support have helped create a leading organization in the Batten disease community and we are dedicated to continue the legacy of children and families.
View recent donor gifts
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2018 Family Conference
Mark your calendars for next year's family conference where we will Walk the Line to a Cure. It will be held from July 19-22 at the Nashville Airport Marriott. To stay in the loop about the latest updates for 2018, like the
BDSRA Family Conference Facebook page and visit our website for photo memories from this year!
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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.
View names of those recently passed
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Your gift makes all the difference in the lives of our families.
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