2016 BDSRA Research Grant Awardees

BDSRA            For Immediate Release
For More Information Contact: Leslie Fulford
Leslie@TeamFleisher.com
614-354-0720 Batten Disease Support and Research Association Awards 2016 Research Grants Nine outstanding research facilities receive funding to further investigation into the deadly disease   Columbus, Ohio (Sept. 20, 2016) — The Batten Disease Support and Research Association (BDSRA) is pleased to announce its 2016 research grant awardees. BDSRA- Australia, Drew’s Hope, Noah’s Hope-Hope4Bridget, Beyond Batten Disease Foundation, and the Thisbe and Noah Scott Foundation have partnered with BDSRA to co-fund these important projects The BDSRA merit review cycle begins in November of each year. Interested researchers are invited to submit a letter of intent (LOI) outlining the research they want to conduct. Those candidates receiving the highest scores are asked to offer full proposals, which are then reviewed by a panel of three scientists. The top proposals are forwarded to the BDSRA board for approval and funding.
(Read More)

BDSRA Announces Board Nominations for November Elections

board-electionsThe BDSRA Board of Directors will have four available seats beginning January, 2017. The board and staff seek individuals who are motivated by the opportunities and challenges of fundraising and resource development, governing, research, and outreach to families. BDSRA Board Service Basics: Terms are 3 years, and board members must be paid dues members of BDSRA. By-laws indicate that 60% of the board must be comprised of a parent of an affected person. Board members may serve consecutive terms. Board members are required to attend 2 meetings in person each year and are responsible for paying the associated costs for transportation, hotel and meals. One meeting is held during the winter and one is scheduled the day before the annual family conference in July. Other meetings are held by conference call, approximately four times a year. Board members with marketing and communications, fundraising, social media, finance, business, accounting, and medical skills are sought at this time.
(Read More)

July/August Issue of the Illuminator

August 2016 Newsletter_Page_1The July/August issue of the BDSRA newsletter The Illuminator is now available.  We will be sending a monthly e-newsletter so that we can share more information with you more often.  This replaces our quarterly format. Click here to read about research grant awards, family resources, board elections and more.
(Read More)

June Issue of the Illuminator

June 2016 Newsletter_Page_1The June issue of the BDSRA newsletter The Illuminator is now available.  We will be sending a monthly e-newsletter so that we can share more information with you more often.  This replaces our quarterly format. Click here to read about virtual 5K results, conference news, fundraisers and more.
(Read More)

May Issue of the Illuminator

May 2016 Newsletter_Page_1The May issue of the BDSRA newsletter The Illuminator is now available.  We will be sending a monthly e-newsletter so that we can share more information with you more often.  This replaces our quarterly format. Click here to read about conference registration, Batten Awareness Weekend, fundraisers and more.
(Read More)

2016 BDSRA Annual Family Conference

BDSRA 2016 Conference LogoThe hotel reservation link is now closed.  If you have not made your room reservations, please contact the hotel Reservation Coordinator, Charlotte Tourkakis  ctourkakis@renaissancestlouisap.com  or 314.890.3151. Please note that room reservations are based on availability. Please contact Sara Aldrich at 518.930.2673 or sarab@sswmeetings.com for conference registration. To see the tentative conference agenda click here For families seeking financial support to attend conference, one source for potential support is contacting the local Developmental Disability Council. There are Developmental Disability (DD) Planning Councils that serve each state and territory in the U.S. and under the umbrella of “Family Support Services” financial help may be available. To see if family support funds might be available in local regions through the DD council, visit http://www.nasddds.org/state-agencies/ If you need any assistance locating your county office or need additional information about this year’s conference, please do not hesitate to contact Becky Hetteberg, BDSRA Director of Family Support and Education at 1-800-448-4570 ext.
(Read More)

March Issue of the Illuminator

March 2016 Newsletter_Page_1The March issue of the BDSRA newsletter The Illuminator is now available.  We will be sending a monthly e-newsletter so that we can share more information with you more often.  This replaces our quarterly format. Click here to read about CLN2 ERT results, CLN3 update, Rare Disease week and more.
(Read More)

Call on Congress to Pass the OPEN ACT

open act 1Last year, the OPEN ACT, legislation that could double the number of treatments for rare disease, was left out of the draft of the House Cures bill.  But policy makers had a change of heart after hundreds of patient advocates flooded the phone lines and asked Congress to put OPEN back in.  Now, the OPEN ACT has again been left out again by the Senate, despite the support of over 160 national patient organizations!  We need your help once again to get the OPEN ACT back in action.  Please take a few moments to call Senators Alexander (R-TN) and Murray (D-WA) TODAY to ensure they help rare disease patients!  Your call will make the difference. To contact Sen. Lamar Alexander, dial: (202) 224-4944 To contact Sen. Patty Murray, dial: (202) 224-2621 Script for Senators Alexander & Murray: My name is [NAME]. I’m calling today as a rare disease patient advocate [Briefly explain your disease, 2-3 sentences] We urge you to support the OPEN ACT, S.
(Read More)