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Upcoming Family Fundraisers
SE Chapter Online Fundraiser: Buy a coupon book for holiday gift giving www.entertainment.com/email Seller #255686
Do you have an upcoming fundraiser? Something planned to help raise money for BDSRA and Batten Disease research? Please let us know by emailing Adina at aryan@bdsra.org.
BDSRA 2010 Dues
Membership Dues for 2010 are increasing to $40.00. The Dues have not been changed since the organization's inception in 1987. Each paid membership receives one vote in the annual elections and all other voting matters. Dues help pay for things like printing and shipping brochures, educational materials, and the Illuminator. They also pay for our numerous programs and services available to everyone who calls or contacts us.
If you live in an area with an active chapter, please pay your $40.00 to your chapter. If you do not live in an area with an active chapter, you can pay your dues directly to the BDSRA National Office. You may also pay your dues online by clicking on the button below. If you have any questions, please contact us.
New Fundraising Program: Capital One Card Lab Connect Benefits BDSRA
Share your passion for BDSRA and donate to our cause with your everyday purchases. We've recently partnered with Capital One Card lab Connect to bring your our newest fundraising program, which helps us earn money effortlessly every day! Just carry one of our custom credit cards and 1% of your purchases made with the card will be donated to our organization. We will also receive a $25 bonus donation when you make your first purchase. As a holiday special, apply through December 31, 2009, and we will receive $50 on your first purchase. Not only will you be donating to our cause with each purchase you make, but you will be helping to spread the word when people see your unique card, designed specifically for our organization.
Visit our webpage: www.cardlabconnect.com/bdsrasupportresearch to apply today and participate in this program!
Goodsearch & Goodshop
Still need to do some holiday shopping? You can use GoodShop to buy your favorite gifts and earn money for BDSRA at the same time. Visit www.goodshop.com, designate BDSRA as your charity and choose the store you wish to shop. A portion of your total purchase comes back to BDSRA. We have raised over $1300 this year thanks to you. Please visit www.goodsearch.com and designate BDSRA as your charity. Everytime you search the web, BDSRA earns one cent! As you can see, these pennies add up very quickly! Spread the word!
December 31, 2009 Deadline for Year End Charitable Contributions
If you are looking to make a tax deductible contribution to BDSRA for 2009, donations must be postmarked on or before December 21, 2009. If you need assistance in making a year end gift, please feel free to call Adina Ryan aryan@bdsra.org and she will be happy to help you.
BDSRA Medical Equipment Exchange
BDSRA maintains a Medical Equipment Exchange for its families. We have many pieces of equipment available including wheelchairs, suction machines, bath aides, feeding supplies, etc. These items are available to BDSRA families at NO COST! If you need a piece of equipment or have equipment to donate, please contact Amy Lombardi (kirka@bdsra.org).
In Loving Memory
Josee Pitchette, daughter of Gilles Pitchette and Jacqueline Violette, Grand Falls, NB Canada
Born: 3/28/78 - Died: 10/17/09 Late onset INCL
Chelsea RaNae Garza, daughter of Alex and Terri Garza, San Antonio, TX
Born: 9/10/92 - Died: 11/20/09 LINCL
Zachary Ahlson, son of Derek & Rachel Ahlson, Rhododendrun, OR
Born: 1/20/03 - Died: 12/1/09 INCL
Amanda Fitzgerald, daughter of Donna Fitzgerald, Elgin, SC
Born: 9/2/81 - Died: 12/5/09 JNCL
BDSRA National Office Staff
Lance Johnston, Executive Director
Nancy Carney, RN, Medical Family Liaison/Educator
Amy Lombardi, MSW, LSW, Coordinator of Family Services
Adina Ryan, Director of Development
Donna Gunn, Office Manager
Batten Disease Support and Research Association
1-800-448-4570
http://www.bdsra.org
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Hello {FIRST_NAME},
Seasons Greetings and Happy New Year to all of our BDSRA families and friends. We hope everyone has a safe and joyous holiday season.
BDSRA website has new look
Have you been to the BDSRA website lately? If you have, you may have noticed that the website has a slightly new look, again. After launching the new site back in June and receiving valuable feedback from our members, we have made a few changes. We hope you find the new site easier to navigate. You may also notice that our "Donation" page is fully integrated into the website. This means all donations are taken directly from our website -- no going to PayPal's third-party page. We will also have a new Bulletin Board coming in early 2010 that will be integrated into the BDSRA website. Lots of changes still coming so please keep checking back!
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BDSRA Approves Juvenile Drug Trial Funding
The Board of Directors of the Batten Disease Support and Research Association is pleased to announce that it has approved a $400,000 award to the Batten Disease Diagnostic and Clinical Research Center at the University of Rochester for a clinical trial of a drug for Juvenile Batten Disease. The drug, Mycophenolate Mofetil, also known as CellCept, is an immunosuppressant used to prevent rejection of transplanted organs in children. In preliminary studies, mice affected by Batten Disease demonstrated improved motor skills when treated with the drug.
The total cost of the trial is $1.1 million. The research team, under the direction of Dr. Frederick Marshall and Dr. Jonathan Mink, is working to raise the additional $700,000 required to begin the study. BDSRA will provide updated information as it becomes available.
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First Human Embryonic Stem Cell Lines Approved for Use Under New NIH Guidelines
NIH Director Francis S. Collins, M.D., Ph.D., today announced the approval of the first 13 human embryonic stem cell (hESC) lines for use in NIH-funded research under the NIH Guidelines for Human Stem Cell Research adopted in July 2009.
"I am happy to say that we now have human embryonic stem cell lines eligible for use by our research community under our new stem cell policy," Dr. Collins said. "In accordance with the guidelines, these stem cell lines were derived from embryos that were donated under ethically sound informed consent processes. More lines are under review now, and we anticipate continuing to expand this list of responsibly derived lines eligible for NIH funding."
Click here to read the complete article.
StemCells, Inc. Provides Update on NCL Program Meeting with FDA
On November 6, 2009, representatives of StemCells, Inc. met with the U.S. Food and Drug Administration (FDA) in Rockville, Maryland to review the results of the Company’s recently completed Phase I trial in NCL and to discuss the Company’s proposed clinical development plans. The Phase I trial was designed to assess safety, and focused on patients in the late stage of the disease. The discussions with the FDA centered on how the Company might construct a second study enrolling patients in less advanced stages of NCL to further expand the safety database and to assess whether earlier intervention might alter the course of the disease.
Click here to read the complete news release.
Garrett's Wings and Hayden's Hope Challenge Grant
Two $25,000 challenge grants have been offered to BDSRA to help fight Infantile Batten disease. Garrett's Wings and Hayden's Hope have each committed up to $25,000 for those making contributions to infantile Batten disease research before February 1, 2010. Last year, BDSRA committed $194,000 toward this research effort and to date have raised over 50% of the funds. These grant opportunities, coupled with your donations, gives us a chance to meet this goal and raise $100,000 for this vital research project.
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