The results are in!  BDSRA held annual elections in November, 2013, and we are happy to announce the names of our new and returning board members.  Returning with us will be Rob Geer and Tracy VanHoutan.  We’re happy to welcome David Pearce, Vice President, Chief Operating Officer of Research, Sanford Health, in Sioux Falls, SD, and Barbara Wuebbels, of Phoenix, AZ, Vice President of Patient Advocacy and Medical Affairs for Audentes Therapeutics.  Official results were tabulated by the accounting firm Laubie, Karling & Associates.  Board nomination ballots were mailed to all current dues paying members of BDSRA.  There were 9 candidates for 4 open positions, and terms are for 3 years.

Rob Geer     Grand Rapids, MI

Professional/Employment Information: Business Development for Kelly IT Resources

Community Involvement/Service Organizations/Volunteer: I have been on the board for the BDSRA for 3 years serving as 1st Vice President, Head of search for Executive Director, Board selection committee and have assisted with technology, web presence and social media presence.  I am also board member for the local University of Michigan Alumni group in Grand Rapids, Chairperson for our church’s finance council and have multiple board positions on a variety of technology groups in Grand Rapids.

 

David Pearce     Sioux Falls, SD

Professional/Employment Information: Vice President, Chief Operating Officer of Research, Sanford Health Director, Sanford Children’s Health Research Center, Sanford Research/USD Professor, Department of Pediatrics, Sanford School of Medicine of the University of South Dakota

Community Involvement/Service Organizations/Volunteer: I have volunteered my time as required with the BDSRA for the last 15 years in a number of ways.  I have attended each BDSRA annual conference during this time. I have served on numerous advisory boards related to my employment related activities in research and in local communities in regard youth sports. Sanford Health is a non-for-profit a 501-3c.

 

Tracy VanHoutan     Downers Grove, IL

Professional/Employment Information: Currency / Foreign Exchange Trader, Ronin Capital, LLC.

Community Involvement/Service Organizations/Volunteer: I have focused on fundraising, advocacy, raising the profile of Batten at the federal level, scientific research and developing relationships with regulatory authorities and drug companies.  With Noah’s Hope, we have committed over $400,000 to the fight against batten disease in partnership with BDSRA.  I have testified before the FDA, NIH, and the Rare Disease Congressional Caucus.  I expect these efforts to further BDSRA goals related to funding, support programs and streamlining the path to therapies.  We have funded projects including: 2 NCL mouse colonies, biomarkers, worldwide patient database/registry,  drug screen assay for NCL therapeutics, a drug repurposing study with possible implications for multiple forms of NCL, BDSRA IT overhaul and preclinical lab work for enzyme therapy which resulted in the current trial for LINCL via Bio-Marin.

 

Barbara Wuebbels     Phoenix, AZ

Professional/Employment Information: Audentes Therapeutics- VP of Patient Advocacy and Medical Affairs.

Community Involvement/Service Organizations/Volunteer: Founding member of the Wellness Community of Central Arizona- a non-profit that provides free counseling and support to patients and families with cancer. Committee along with director was responsible for raising over 1 million per year for operating expenses. Parish council St. Daniel’s Catholic Church. Arizona Biomedical Research Commission-appointed by the Governor to review scientific research requests submitted by researchers at universities and organizations within the state of Arizona.