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Media Articles
Upcoming Family Fundraisers
Battin' for Batten Disease First Annual Softball Tournament: May 22nd - Blue Springs, MO
Barkin' for Batten 1st Annual Charity Dogwalk: May 22nd - Columbus, OH
2nd Annual Hayden's Hope Harley Ride: May 22nd - Two Rivers, WI
Minnesota Chapter 5K Run/Walk: May 22nd - St. Paul, MN
3rd Annual Hayden's Hope Benefit: May 29th - Two Rivers, WI
MPMF Race for a Miracle: June 6th - Abita Springs, LA
Hayden's Hope Brat Fry: June 12th - Two Rivers, WI
2nd Annual Kick Batten's for Carl Youth Soccer Camp: June 12th - Arlington, WA
Melissa Froio Foundation Annual Golf Tournament: June 18th - Sicklerville, NJ
Mary Payton Miracle Foundation 5K/8K Race: June 19th - Indian Head, MD
7th Annual "Kevin's Fund" Golf Tournament: June 25th - Hagerstown, MD
AsherBash5: July 17th - Huron, OH
3rd Annual Hayden's Hope Volleyball Tournament: July 30th thru August 1st - Two Rivers, WI
Battle of the Bands: August 7th - E. Templeton, MA
A Cure for Nick Golf Tournament: August 21st - Waterloo, IA
2nd Annual Batten Disease Research Golf Tournament: August 23rd - North Dartmouth, MA
Highlandville Fun Fest: September 18th - Highlandville, IA
Batten Sibs and Friends Raise Money for BDSRA
Siblings and friends of children with Batten Disease are pretty amazing people! Anna (age 8) and Caroline (age 10) Medley and their cousin, Henry, set up a lemonade stand in their hometown of Jacksonville Florida one sunny Spring day. Their fundraising efforts raised $19 for BDSRA and they did it all on their own! Gracie Brown recently celebrated her birthday and instead of getting presents, Gracie asked that her fellow party-goers bring a donation for BDSRA in honor of their friend Taylor Mohr who has Late Infantile Batten Disease. Gracie sent $160 in donations to BDSRA and a hand-written note expresssing her love for her friend Taylor and the hopes of finding a cure.
You can see the hand-written notes on the BDSRA website under the "Batten In the News" section.
Need More Information or Support Planning Fundraisers for BDSRA?
This is the time of year fundraising events and activities get into full swing. If you are planning an event, or would like to, but need additional help, please call Adina Ryan, Development Director at 866-287-7233 or email her at aryan@bdsra.org. Don't spend time reinventing the wheel. We have lots of fundraising planning guides available for different events, templates, sample letters, and are here to support your efforts. You can even buy promotional items through our BDSRA Store online at cost for your fundraiser!
Equipment Exchange Program
The Equipment Exchange Program is available to any BDSRA family needing equipment. If you are in need of a certain piece of medical equipment or medical supplies (i.e. feeding tube supplies, suctioning supplies, dental supplies) please contact Nancy Carney, RN (nancycarney@bdsra.org) to see if BDSRA has the equipment available. Equipment is shipped at no cost to the family. If you have a piece of equipment you'd like to donate, please contact BDSRA.
In Loving Memory
WILLIAM STANCOMBE, son of Maria Stancombe, Merrimack, NH
Born: 09/23/02 -Died: 04/07/10 - Late Infantile
DANIEL KERNER, son of Marcus & Joanna Kerner, Trabuco Canyon, CA
Born: 01/13/00 -Died: 04/12/10 - Late Infantile
JAMIE HUELIN, daughter of Sheldon & Loriann Huelin, Brantford, Ontario, Canada
Born: 03/13/01 - Died: 04/16/10 -Late Infantile
MARIANA ESTEVA, daughter of Isabel Esteva, Argentina
Born: 12/01/90 - Died: 04/17/10 - Juvenile
KELSIE CLYNCKE, daughter of Lori Clyncke, Auroro, CO
Born: 12/05/96 - Died: 04/18/10 - Late Infantile
MICHAEL PINDER, son of Michael & Vicki Pinder, Sinking Springs, PA
Born: 08/30/89 - Died: 04/28/10 - Infantile
BDSRA National Office Staff
Lance Johnston, Executive Director
Nancy Carney, RN, Medical Family Liaison/Educator
Adina Ryan, Director of Development
Donna Gunn, Office Manager
Batten Disease Support and Research Association
166 Humphries Drive
Reynoldsburg, OH 43068
1-800-448-4570
http://www.bdsra.org
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