Insights

Strategic Partnerships Potential collaboration opportunities with care networks and patient advocacy groups such as Care Beyond Diagnosis and BDSRA affiliates to co-host research funding campaigns, awareness drives, and clinically validated guidelines initiatives that can expand BBDF's reach and funding streams.

Sponsorship & Events BBDF already engages in sponsorships for conferences and awareness days. This presents a sales channel to offer targeted sponsorship packages, branded research funding opportunities, and exclusive access to clinicians and families at the 2026 BDSRA Annual Family Conference.

Clinical Guideline Programs The foundation’s work on internationally validated clinical management guidelines for CLN3 indicates demand for medical writing, patient registry support, and data services; explore partnerships to provide guideline development, dissemination platforms, and evidence generation services.

Philanthropy & Funding With sub-$1M annual revenue, BBDF may be open to donor management systems, grant management software, impact reporting tools, and fundraising analytics services that can improve donor engagement and growth for rare disease research.

Talent & Outreach BBDF has recently expanded leadership (e.g., appointing a new Director) and collaborates with multiple stakeholders. This signals receptiveness to capacity-building services, fundraising training, and stakeholder engagement programs to accelerate research funding and program delivery.

Beyond Batten Disease Foundation Tech Stack

Beyond Batten Disease Foundation uses 8 technology products and services including iCIMS, WordPress, Shopify, and more. Explore Beyond Batten Disease Foundation's tech stack below.

Beyond Batten Disease Foundation's Email Address Formats

Beyond Batten Disease Foundation uses at least 1 format(s):
Beyond Batten Disease Foundation Email FormatsExamplePercentage
FLast@beyondbatten.orgJDoe@beyondbatten.org
63%
First@beyondbatten.orgJohn@beyondbatten.org
12%
Last@beyondbatten.orgDoe@beyondbatten.org
13%
FMLast@beyondbatten.orgJMDoe@beyondbatten.org
12%

Frequently Asked Questions

What is Beyond Batten Disease Foundation's phone number?

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You can contact Beyond Batten Disease Foundation's main corporate office by phone at . For more prospecting data, LeadIQ has access to up-to-date and accurate contact information within our platform. Find, capture, and sync contact data to your CRM and sales tools in one click.

What is Beyond Batten Disease Foundation's official website and social media links?

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Beyond Batten Disease Foundation's official website is beyondbatten.org and has social profiles on LinkedIn.

How much revenue does Beyond Batten Disease Foundation generate?

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As of August 2026, Beyond Batten Disease Foundation's annual revenue is estimated to be <$1M.

What is Beyond Batten Disease Foundation's SIC code NAICS code?

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Beyond Batten Disease Foundation's SIC code is 8299 - Schools and Educational Services, Not Elsewhere Classified NAICS code is 5417 - Scientific Research and Development Services.

How many employees does Beyond Batten Disease Foundation have currently?

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As of August 2026, Beyond Batten Disease Foundation has approximately 6 employees across 2 continents, including North AmericaOceania. Key team members include Communications Manager: E. A.Development Manager: E. L.Manager: S. V.. Explore Beyond Batten Disease Foundation's employee directory with LeadIQ.

What industry does Beyond Batten Disease Foundation belong to?

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Beyond Batten Disease Foundation operates in the Research Services industry.

What technology does Beyond Batten Disease Foundation use?

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Beyond Batten Disease Foundation's tech stack includes iCIMSWordPressShopifyGoogle CloudConstant ContactWP EngineVimeoPiwik PRO Core.

What is Beyond Batten Disease Foundation's email format?

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Beyond Batten Disease Foundation's email format typically follows the pattern of FLast@beyondbatten.org. Find more Beyond Batten Disease Foundation email formats with LeadIQ.

When was Beyond Batten Disease Foundation founded?

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Beyond Batten Disease Foundation was founded in 2008.
Beyond Batten Disease Foundation logo

Beyond Batten Disease Foundation

Research ServicesTexas, United States2-10 Employees

Beyond Batten Disease Foundation is a small nonprofit organization focused on juvenile Batten disease, based in Austin, Texas. It was founded in 2008 by Charlotte and Craig Benson after their daughter's diagnosis, with a mission to eradicate the disease by raising awareness and funding to accelerate research toward a treatment or cure. The foundation is described as a world leader in funding research for juvenile Batten disease.

Its work centers on supporting research and coordinating with partners to advance care and guidance for the condition. In 2021, BBDF partnered with Care Beyond Diagnosis to establish internationally validated management guidelines for CLN3 disease, a rare and fatal neurodegenerative disorder.

Section iconCompany Overview

Phone number
SIC Code
8299 - Schools and Educational Services, Not Elsewhere Classified
NAICS Code
5417 - Scientific Research and Development Services
Founded
2008
Employees
2-10

Section iconFunding & Financials

  • <$1M

    Beyond Batten Disease Foundation's revenue is estimated to be in the range of <$1M

Section iconFunding & Financials

  • <$1M

    Beyond Batten Disease Foundation's revenue is estimated to be in the range of <$1M

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