Business Details
45 Years
experience
Support & Research for Blepharospasm
The Benign Essential Blepharospasm (BEBRF) is a volunteer-driven nonprofit organization dedicated to advancing research, providing patient support, and educating the public and medical community about benign essential blepharospasm (BEB) and related disorders. Founded in 1981 by Mattie Lou Koster, the foundation focuses on funding scientific studies to identify the cause and develop cures for BEB while offering resources such as support groups, educational materials, and advocacy for patients. With a mission rooted in improving quality of life for those affected, BEBRF operates through charitable donations and hosts symposiums to disseminate research updates and treatment advancements.The organization emphasizes patient empowerment through initiatives like newsletters, webinars, and partnerships with pharmaceutical companies to assist with treatment access. Its work has directly contributed to increased awareness of BEB among healthcare professionals and the public, ensuring patients receive accurate diagnoses and effective care.
Services
Patient Support Groups
Research Funding
Medical Education
Treatment Referrals
Advocacy Programs
Details
- Year established: 1981
Highlights and features
- We fund groundbreaking research to identify the cause and treatments for BEB.
- Our nationwide support groups provide emotional and practical assistance to patients.
- We offer educational resources to help patients navigate diagnosis and treatment.
- We advocate for improved access to botulinum toxin therapies through pharmaceutical partnerships.
- Our symposiums connect patients with leading neurologists and ophthalmologists.
Associations and certifications
- 501(c)(3) Exempt Organization
What people say
Lifeline for patients
Compassionate support
Treatment guidance
Research advancements
Peer connection
Services
Patient Support Groups
BEBRF facilitates local and virtual support groups to connect patients, share coping strategies, and provide emotional assistance. These groups help individuals manage daily challenges through peer interaction and expert-led discussions on treatment advancements and lifestyle adjustments.
Research Funding
The foundation allocates funds for studies investigating the genetic and neurological basis of BEB, aiming to discover cures and improved therapies. Grants support both early-stage and established researchers in fields like neurology and ophthalmology.
Medical Education
BEBRF produces educational materials and hosts symposiums to inform healthcare providers about BEB diagnosis and treatment. Initiatives include publishing medical papers, videos, and guidelines to enhance clinical understanding of the disorder.
Treatment Referrals
Patients receive guidance to locate specialists experienced in administering botulinum toxin injections and other BEB treatments. The foundation maintains updated lists of neurologists and ophthalmologists nationwide.
Advocacy Programs
BEBRF advocates for patient rights by promoting access to treatments, disability benefits, and research funding. Efforts include lobbying for legislative support and collaborating with healthcare organizations to address systemic barriers.
People
Mattie Lou Koster
Founder
Diagnosed with BEB in 1980, Mattie Lou Koster founded BEBRF to advance research and support patients. Despite personal health struggles, she championed awareness campaigns and symposiums, establishing the foundation as a global resource.
Charlene Hudgins
Executive Director
Charlene Hudgins leads BEBRF's daily operations, managing patient outreach, symposium coordination, and pharmaceutical partnerships. She provides direct support to patients seeking treatment assistance and disability resources.
Questions
What is benign essential blepharospasm?
BEB is a neurological disorder causing involuntary eyelid spasms due to basal ganglia dysfunction. It is not life-threatening but can severely impact quality of life.
What treatment options are available?
Treatments include botulinum toxin injections, oral medications, surgery, and sensory tricks. BEBRF provides resources to help patients find effective care.
How can I connect with other BEB patients?
Join BEBRF's local or virtual support groups to share experiences and receive emotional support from others facing similar challenges.
Does BEBRF fund research studies?
Yes, BEBRF has invested over $3 million in research to identify BEB's cause and develop cures, including genetic and neuroimaging studies.
How do I find a BEB specialist?
Contact BEBRF for referrals to neurologists and ophthalmologists experienced in administering botulinum toxin injections and managing BEB.
Can I get help paying for treatments?
BEBRF partners with pharmaceutical companies to assist patients with financial barriers to botulinum toxin therapies and other treatments.
Videos