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Join Us in Raising Awareness for Batten Disease During Batten Disease Awareness Weekend June 1-2, 2013
05/24/2013We all know how important awareness is to fight and cure Batten disease. Here are some ideas for you to share with family and friends to bring awareness to your community:
> Click Here to Download Your Batten Disease Awareness Weekend Posters:
BDAW Poster - Print this as a poster for your office cubicle or upload the jpg as your Facebook picture.
BDAW Add Your Family Poster (click here to download) - This version allows you to add your family photo for a custom poster. Once you insert your photo into the poster, save it as a picture to upload to Facebook.
> Honor Your Loved Ones Through Action By:
♦ Increasing visitors to www.bdsra.org by adding the link to your email account signature, which encourages others to view the link. Then send an email about Batten Disease Awareness Weekend to friends, family, co-workers and neighbors with the web address.
♦ Contributing online to Batten disease research at www.bdsra.org. Click Donate Now!
♦ Update your Facebook account to encourage your FB community to learn about Batten Disease Awareness Weekend by visiting www.bdsra.org.
♦ Asking members of your church, synagogue, community clubs or sports teams to join you in sending an email or FB message about Batten Disease Awareness Weekend with the link to BDSRA’s website.
♦ Asking 10 people to donate $10 to BDSRA – and ask them to ask their friends to do the same – during Batten Disease Awareness Weekend.
2013 Conference Program Now Available
05/07/2013
BDSRA’s Annual Conference
July 18-21, 2013 at the Nashville Airport Marriott.
A tentative 2013 Conference Program can now be found on our Conference page.
Also, check out sponsor opportunities to support the conference by clicking here.
BDSRA Practice Guideline RFP Open until September 1, 2013
04/01/2013Practice Guidelines for the management of Batten disease. BDSRA seeks to fund the development of practice guidelines for the diagnostic confirmation and management of individuals with Batten disease. Literature reviews, consensus statements created by a panel of international experts in clinical and laboratory diagnosis or treatment and management and endorsement from appropriate international professional societies such as the American Academy of Neurology, American Association of Neuroscience Nurses, etc. is required. These guidelines will serve as an educational resource for clinicians new to Batten disease. Therefore, it is expected that they will follow the Institute of Medicine’s Standards for Developing Trustworthy Clinical Practice Guidelines (http://www.iom.edu/Reports/2011/Clinical-Practice-Guidelines-We-Can-Trust/Standards.aspx) and be widely disseminated in the most appropriate form and forum. The authors will be provided with $5,000 to create practice guidelines based upon the current state of science and clinical care and $10,000 if their plans include the creation of an international working group dedicated to developing additional guidelines across multiple levels of care — seizure management, occupational therapy, nutrition etc.
Applicants must send an email request for consideration of their topic area by August 1, 2013 to Dr. Frazier (mfrazier@bdsra.org) for approval before attaching a free-form grant application to administrative pages of the application form. Single issue and compendium practice guideline proposals will be due September 1, 2013.
- BDSRA RFP 2013
- BDSRA Grant Application 2013
- BDSRA Reviewer Critique Form 2013
- BDSRA Reviewer Instructions 2013
- BDSRA FAQs 2013
- BDSRA DrX Sample Contract 2013
$1M in Batten Disease Research Funding Awarded through BDSRA Research Funding Collaborative
03/15/2013$1M in Batten Disease Research Funding Awarded
BDSRA Has Moved!
01/10/2013The new BDSRA offices opened January 3, 2013. Our fresh new space provides many great opportunities to partner with local universities and research centers. Just five minutes from Downtown Columbus, we look forward to taking advantage of the many resources it has to offer. Some office construction is still underway, but we are fully operational. Our new address is 1175 Dublin Road, Columbus, OH 43215; our current toll-free number remains (800) 448-4570. Come visit us some time!