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2012 BDSRA Conference
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Building awareness and raising funds for Batten Disease Research
Below is an archive of material pertaining to fundraising for family and friends of those impacted by Batten Disease.
Parents hope walks raise $100,000 for Batten disease research
In Vicki Pinder's mind, having to bury three children was hard enough.
Having to fight those battles blindly, with doctors knowing little to nothing about the disease that was taking away her family, was nearly unbearable.
Vicki and her husband, Mike, of Spring Township have lost three children to Batten disease, a rare affliction that can cause mental impairment, worsening seizures and progressive loss of sight and motor skills.
"Nobody was out there researching," Vicki said. "It's a death sentence when your kid gets that diagnosis. How do you pick yourself up the next day when that happens?"
Their 20-year-old son, Michael, died in April 2008.
Before that, Michael's sisters, Mindy, 21, and Marcy, 20, also succumbed to the disease.
Because the disease is so rare, the Pinder family found itself without answers. There was little in the way of research about the condition, and most doctors the Pinders visited knew next to nothing about it.
The Pinders' friends and relatives are trying to help change that.
Read Full Article Below
Read more online (off-site link) 
Read more in Adobe Acrobat(.pdf)2011 Walk a Thon Guide
Walk-A-Thon’s are a fun and easy activity to plan and raise funds for BDSRA. Friends, family, schools and co-workers can spend time together in a healthy activity while making a valuable contribution to the community.
Walk-A-Thon’s raise money when walkers are recruited to participate in the day’s activities and solicit donations prior to the event. Participants are asked to bring collected donations to registration on walk day. You will be amazed at the amount of support and generosity that your friends, family members and business contacts give you, simply because you ask for their support.
2011 Fundraising Guide
Basic Principles of Fundraising
- People give to people, not causes. There are thousands of good causes out there and most people tend to give because someone they know is affected, involved, or a friend recommended it. Remember that you are asking someone to help children who are dying with a horrible, fatal neurological disease, not for yourself.
- Underdogs may be popular in sports, but not in fundraising. People give to worthwhile and successful organizations. Organizations that are well run and doing important work. You should feel that you are providing the donors with an opportunity to support a serious mission.
- You can’t get money if you don’t ask for it. There are very few people who will send money unsolicited. Even if you tell them you are raising money for an important cause, but forget to ask for a donation, the chances are pretty good that you will not receive a donation.
- Make your gift first and ask in person. Always make your own gift first. Your own contribution gives credibility when you ask someone else. Whenever possible, it is always better to ask for a donation in person rather than by telephone or mail. If you do use a mailing campaign, be certain to follow up either by phone or in person.
Read the rest of these principles and more on the pdf attachment below.
First Time Fundraisers bring in $18,000
Miles for Michael, a fundraiser to benefit the Batten Disease Support and Research Association, was held Saturday at the John Gurski Stadium at Wilson High School.
More than 350 people walked the outdoor track at the stadium to raise $18,000 to fight the disease that took the life of Michael Pinder, son of Mike and Vicki Pinder of Spring Township. Batten disease is a fatal, inherited disorder of the nervous system.
Kufs Bike Run Benefit
August 21st in Shelbino, MO.
An awareness and fundraising benefit to honor Paula White and Jim Frye
Rocking & Rolling for a great cause
Asher Nikolajevs, 13, may be suffering from Batten Disease (Neuronal Ceroid Lipofuscinosis), but his family is focused on making sure his struggle with the eventually fatal ailment is not in vain by hosting their annual fundraiser. This year marks the fifth AsherBash event, which takes place July 17 at Knucklehead Saloon in Huron.
“This is where we raise money for research for (the) Batten Disease Support and Research Association,” said Nikolajevs’s mother, Leisa Nikolajevs. “It’s an international organization that, thankfully for us, is pretty local, located in Reynoldsburg, Ohio near Columbus. Batten Disease is pretty rare and it doesn’t get a lot of government funding. So as parents, we feel obligated to do whatever we can for research, and this is our event to do that.”
Batten Awareness Recognition
Dear Batten Families,
We all know the importance of bringing Batten Disease awareness to the community in order to increase funding for research. Many of our families have done a tremendous job putting together websites, Facebook pages, Twitter accounts, blogs etc. that help promote awareness for Batten Disease. At this year’s conference, we would like to recognize some of those sites, pages and postings. We are asking you to forward a link to any of your sites to be displayed at this year’s conference.
We are also interested in pictures you have from any community events or fundraisers. Please send these links and pictures to aryan@bdsra.org.
Thank you,
BDSRA board
BDSRA In-Kind Donation Needs
Below is a list of items BDSRA is in need of, if you'd desire to make an in-kind donation or sponsorship:
- DVD-R's
- CD+R
- Jewel Cases
- Business and Mailing Envelopes
- Copy Paper
- Ink and Toner Cartridges (please call for specifics)
- Postage
- File Folders and Binders
- Batteries
- Packing Slips
- mailing labels.
- Mino Flip HD video camera
We would also like to find an in kind sponsor for our newsletter to cover the cost of printing and distribution.
Email Adina Ryan, Director of Development, for more information
Soccer Fundraiser Planned
“Kicking Batten’s for Carl” is a soccer clinic and silent auction fundraiser set for Saturday in the playfields adjacent to the Arlington Boys & Girls Club on 59th Avenue NE.
Carl Bergram, the late son of Jeff and Robin Bergam, suffered from Batten Disease, a neurological disorder that causes seizures, mental impairment, a progressive loss of sight and, finally, death. Carl died Feb. 3, 2009. There is no known cure for the disease.
Corporate Conference Support Letter
Read more in Microsoft Word(.doc)Celebrity Contact Letter
Beads for Batten Fundraiser
The beads cost $3 each, and 100% of the proceeds benefited BDSRA (earmarked for infantile research, and so matched by Emma's Hugs).Jeri sold nearly 1500 beads, raising over $4,000 that has been donated in honor of our daughter Celia Betz. People who bought beads received a coupon to use at the local Bob Evans (the original homestead in Rio Grande, Ohio) which allowed 15% of their dinner bill to be donated to BDSRA as well.
Event Specific Batten Awareness Weekend Release
General Batten Awareness Weekend Press Release
Hayden's Hope Charity Ride
The Hayden's Hope Charity Ride took place on Saturday, May 22, 2010. The ride began at Stock's Harley Davidson in Manitowoc, WI and ended at the Iron Buffalo Saloon in Menchalville, WI. We had a wonderful turnout...140 bikes and we raised $8,000. It was a blast!
BDSRA Logo
Recently BDSRA underwent a change to our logo. This new logo is for your use in any printed materials you might like to print and share for your fundraising events, letters, and press releases. We have two additional logos available. If you need further assistance with logos, please contact the Director of Development at 866-287-7233.Sample Press Release
WalkAThon Planning Guide
WalkAThon's are a fun and easy activity to plan and raise funds for BDSRA. You will be amazed at the amount of support and generosity that your friends, family members and business contacts will give you, simply because you ask. 
BDSRA Postage Now Available!
Private label postage now available on Zazzle.com! This is a unique opportunity to help build awareness to our cause. Please be sure to check out additional Batten Disease merchandise and postage from other supporters as well.