Staff
Amy Fenton Parker, President & CEO
As the chief steward, Amy creates a caring environment that keeps the patient and family at the center of care in everything BDSRA does to support, advocate, and facilitate research for treatments and a cure. The President & CEO works with the Board of Directors and staff to create and achieve mission-driven goals, further develop and implement the strategic plan and objectives, and cultivate partnerships for greater community impact and financial health of BDSRA. Please contact Amy with stewardship, fundraising and legacy questions, industry collaboration, or assistance learning more about BDSRA.
Direct: (614) 973-6011
Toll-Free: (800) 448-4570
Amy@bdsrafoundation.org
Ineka Whiteman, Ph.D., Head of Research & Medical Affairs
As BDSRA’s Head of Research & Medical Affairs, Dr. Whiteman oversees the Foundation’s research investment and grant process for all Batten disease CLN types, to ensure the organization fosters and supports the best possible research into Batten disease in the United States and internationally. Dr. Whiteman also explores and identifies opportunities for new research avenues and partnerships, works with industry partners on research pipelines and clinical program opportunities, and builds authentic, collaborative relationships with key groups, including our families, researchers, clinicians, advocates, and industry partners. She maintains current knowledge of the scientific and clinical research landscape and leads the Foundation’s scientific education initiatives. Please contact Dr. Whiteman for any questions related to Batten disease research and clinical trials.
Email: Research@bdsraaustralia.org
Heather Dainiak, Director of Family Support
As BDSRA’s Director of Family Support and a bereaved Batten mother to Nicholas, who had CLN2, Heather provides crucial connections and support to families on their Batten disease journey in the United States and Canada. Heather’s experience as a Batten mother gives BDSRA an important perspective when it comes to family support and patient advocacy and providing support services for families and professionals in the Batten Community. In her role, Heather also develops and enhances programming to meet unique and changing family needs, oversees the development of all education projects, and leads the implementation of the BDSRA Annual Family Conference.
Email: Heather@bdsrafoundation.org
Linda Barkhurst, Office Manager
As BDSRA Foundation’s Office Manager, Linda leverages her extensive knowledge and administrative experience in the healthcare industry to organize the day-to-day needs and objectives of BDSRA. These include donation management, business inquiries, grant fulfillment, and supporting the team with multiple other general needs.
Direct: (614) 768-1159
Toll-Free: (800) 448-4570
Linda@bdsrafoundation.org
Noah Siedman, Database Manager
As database manager, Noah is responsible for collecting, tracking, and maintaining incoming grants, donations, and registration information. He works closely with the Office Manager to ensure that donations are properly stewarded throughout the gift acceptance process. Noah builds accessible, sustainable systems to inform decisions regarding development, marketing, and advocacy so that BDSRA Foundation can present a data-driven picture of its status and prepare for future growth. A rare sibling and advocate, Noah brings an important perspective to BDSRA with his commitment to building inclusive rare communities. For questions regarding the gift acceptance process, grants and tributes, please contact Noah.
Direct: (614) 973-6012
Toll-Free: (800) 448-4570
Noah@bdsrafoundation.org
Patrick Kotnik, Marketing & PR Coordinator
As Marketing & PR Coordinator Patrick works closely with staff to develop and execute BDSRA’s marketing needs. He is an expert multitasker who is tech-savvy with an advanced understanding of social media marketing (organic and paid), website maintenance, graphic design, copywriting/editing, and messaging for internal and external stakeholders. This includes content on BDSRA social media platforms, the Illuminator Newsletter, website modifications, Linktree, virtual event registration, and printed materials. For questions or inquiries pertaining to our social media, website, or marketing campaigns- please contact Patrick.
