You Make it Possible to Fund Our Mission

All Gifts and Donations are Vital to Support Families, Fund Research, and Raise Awareness

BDSRA funding for services, research grants, and outreach is accomplished primarily through charitable donations.   Families coping with Batten disease inspire volunteers across the U.S. and North America to dedicate hundreds of hours to support the cause of BDSRA, through events, through fundraising activities, and awareness building in their home communities.   Whether it’s a 5K, golf tournament, garage sale, fun run, or lemonade stand, our supporters are tireless in their efforts, and generous with their time to bring diverse groups of people together in the fundraising enterprise.    We are grateful for the ongoing support, time, and efforts that volunteers devote throughout the year to raising crucial funds for research and services.   At the end of each day, this generosity enables BDSRA to help families and empower families to help each other.

Giving Highlights

Annual Fund *

The BDSRA Annual Fund is organized to generate special gifts to make services and programs available to those affected by Batten disease, and to fund research initiatives in the areas of highest priority.  These gifts ensure a solid financial base for BDSRA to carry out the mission of the organization and serve the growing number of families linked by a Batten disease diagnosis.  Annual fund gifts are also a meaningful way to honor or remember loved ones affected by Batten disease and those who care for them.

Workplace Giving *

Throughout many cities and states in the U.S., generous donors contribute to BDSRA through workplace giving programs such as the CFC and United Way.  In 2012 and 2013, more than $ 18,825 was designated to Batten disease by individuals in these programs.  Many donors also double their donations through the matching gift programs their companies provide for employees.

Research Funding *

BDSRA manages a diverse pool of restricted funding to support research into the diagnosis, cause, and potential treatments for Batten disease.  Every year these funds are distributed to researchers and scientists through a rigorous peer-review process that focuses on scientific merit and translational potential.   Individual donations are leveraged through a vital set of collaborative partnerships with family foundations and international Batten groups to advance the best scientific projects and studies.  In 2012 and 2013, approximately $ 1.3 million was allocated for research initiatives to scientists across the globe engaged in Batten disease research.

Batten Awareness Weekend *

The first weekend in June every year is designated as Batten Awareness Weekend.  Families and their advocates and supporters bring the message of hope and the awareness of the disease to thousands of people and inspire charitable gifts to BDSRA.  Through social media campaigns, home town fundraisers, school and church events, and awareness projects, volunteers explain their connection to Batten disease and the importance of raising funds for support and research.

Bequest and Estate Gifts *

Designating BDSRA in an estate plan or will is a simple way to create a sustaining legacy to support Batten disease services and research into the future and honor a special individual who has inspired others in facing the disease.  Legacy funds can be named in honor or memory of a loved one.  A named fund can also be dedicated and restricted for special purposes, such as research or programs, that the donor has a special interest in aligned within the mission of BDSRA.

BDSRA Chapter and Community Fundraisers and Events *

On many weekends during the year in the U.S. and in many countries, energetic and passionate volunteers gather to devote time and talents to the cause of raising funds for Batten disease research and services.  Special events and community based fundraisers organized through BDSRA Chapters, neighborhoods, families, and friends of those with Batten disease generate crucial revenue and resources.  In 2013, BDSRA Chapters in the U.S. and Canada raised and donated $120,117 for Batten disease.  With this support, partnership, and charitable base, BDSRA is able to continue its work to accomplish important goals in research, advocacy, and service.  The dedication of so many donors and volunteers makes it possible to keep searching for new scientific breakthroughs as families hold on to hope.

Corporate and Foundation Grants *

Special projects and focused programs are made possible for BDSRA by the support of special grants from foundations and corporations.  In 2013, BDSRA was awarded a Genzyme Patient Advocacy Leadership Award (PAL) to create multicultural practice guidelines for Batten disease.  The Genzyme global grant program supports outreach programs by nonprofits that work on behalf of patients living with lysosomal storage disorders.  With the guidelines project, BDSRA hopes to improve the diagnostic efficiency and disease management for Batten patients by producing practice guidelines for medical professionals around the globe.  The Wawa Corporate Charities program of Pennsylvania also supported this project.

Memorial and Honorary Gifts *

Designating special gifts to BDSRA to honor or memorialize a loved one affected by Batten disease has a long tradition within the organization.  In 2013, 67 percent  of all charitable dollars donated to BDSRA were in memory or honor of a special person.   We strive every day to bring the inspiration, courage, and hope of so many to the work that is done on behalf of families and children.  BDSRA is committed to this important link between past and future, so that all who have faced Batten disease are remembered and their stories shared.

 

 

 

 

 

Advocacy