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Benign Essential Blepharospasm Research Foundation Inc

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Nonprofit Overview

Causes: Disabilities, Eye Diseases, Blindness & Vision Impairments Research, Health

Mission: Education, support, and research pertaining to blepharospasm and its related disorders

Target demographics: people with blepharospasm. cranial dystonia, hemifacial spasm, and their families

Direct beneficiaries per year:

Geographic areas served: the United States and abroad

Programs: Provide education, support, and research regarding benign essential blepharospasm and related conditions

Community Stories

16 Stories from Volunteers, Donors & Supporters

1 Linda P.13

Client Served

Rating: 5

I have belonged to this organization for 25 years both as patient and as office holder for all of those. The original founder only wanted recognition of Blepharospasm as a true disorder so that sufferers could get treatment. Through her dogged determination and friendship with Dr. Scott who developed Botox, patients are now able to find treatment.

Monies collected are used for education (for doctors, patients, the public). Blepharospasm is a rare neurological disorder that is not always recognized and many insurance companies won’t cover botulinum toxin treatment. The organization has a medical board of dedicated physicians and researchers and have only two office staffers.

With the internet, the organization can support patients virtually not only here but overseas. Annual symposiums allow doctors and patients to build relationships and further the education and support.

Rare disorders are difficult to diagnose and patients are suffering through not only symptoms but fights with insurance companies, employers, and even family to understand the problem is not mental illness or something the patient can control.

1

General Member of the Public

Rating: 5

It has been a life changing experience since my first diagnose of Blepharospasm in 2019. I have since retired from mine 39 years of library services which required a great deal computer research and reading. I had to drastically reduced my hours of driving through the city for various professional meetings, community outreach activities to relying only on friends and Uber for doctors visits. Across city of El Paso on interstate I10 takes 60 plus minutes on a good day. According to BEBRF's survey only 3 doctors offer treatment for Blepharospasm within 50 miles of radius of where I live. During the the pandemic, lacking adequate staff to file insurance paperwork, all three Ophthalmologists stopped their practice on these type of treatments. I sank into desperation and depression. I fear I have turned from a highly active and productive person into a complete invalid.
a few months ago, my friend did a search found the Benign Essential Blepharospasm Research Foundation (BEBRF) website and the SW chapter of BEBRF Support Group.
I made a call to the Foundation and a call to the Support Group.. The quick responses, the wealth of information from the Executive Director, Charlene Hudgins, was enormous and empowering. The knowledge gained from the newsletters, webinars has been very helpful. The warmest greeting and chats from Ena Wilmot, the groups' zoom meeting really lift up my spirit. I don't feel so alone in this desperate situation, and I will continue looking for a suitable solution and treatments. Thank you BEBRF.

1 Lynn H.7

Client Served

Rating: 5

Very helpful organization. Much appreciate the information shared. This condition is a real struggle to manage and this is a place to turn for help and encouragement.

2

Client Served

Rating: 5

I was diagnosed with benign essential blepharospasm, and shortly thereafter with Meige syndrome, in 2013. BEBRF provided me with the information I needed to understand my rare disorder and seek the best treatment. I have been involved with BEBRF since then, as a patient, volunteer, and donor.

I feel that BEBRF's work to support and inform patients is outstanding. Through their website, newsletters, online and in-person support meetings, "Ask a Doctor" Q & A's, social security disability information packets, and many other resources, they help people deal with physical, emotional, and financial challenges. Having a rare disorder can be lonely, and having an organization like this one to turn to made me feel less alone.

BEBRF supports research that is seeking a cause and cure for blepharospasm, Meige syndrome, and related facial movement disorders. The foundation provides information to the medical community about these disorders, which is important because some patients endure symptoms for several years before receiving an accurate diagnosis. Thanks to BEBRF's dedicated efforts, there is more awareness and more hope for a cure.



1

Client Served

Rating: 5

I will be forever grateful to BEBRF. I was undiagnosed from 1985 until 1990 when a doctor at UCLA Stein Eye Institue recognized my symptons immediately and suggested I talk with someone in the BEBRF Support Group before I get treatment and said they would help with the many important things I'd need to do and know like having the right insurance, right doctor, get support for my husband, gave me a lot of BEBRF literture explaining what BEB was and what to expect. At that time most doctor didn't even know about BEB. BEBRF helped to educate doctors. I was only 50 and most of the support group members were in their 70s, 80s and more. They took me underwing and even went with me for my first injections. BEBRF held conventions/seminars/symposiums providing updated research information, etc and that's when my husband spoke to another attendee about a natural suppliment. I eagerly took it and saw improvement within a short time. I've been using the suppliment successfully for 25 yrs. saving me from having severe BEB symptoms. I probably blink more than most people but haven't had to get Botox injections since 1997. I volunteered as NV State Support Group Coordinator but recently gave it up. I shutter to think where I'd be today if I hadn't gotten BEBRF support. They are a great organization that I support whole heartedly and will forever be indebted to them.

1 Steve G.2

Client Served

Rating: 4

The bulletin board is a great source for information regarding blepharospasm, as well as other movement disorders.
Most people who post have experience with the medications and treatments they recommend.

2

Client Served

Rating: 5

The BEBRF is an outstanding reliable professional nonprofit foundation. Their Mission Statement is very clear and direct to provide professional medical research, support and assistance to all those individuals inflicted with the disease of Blepharospasm. The Foundation has established geographic regions within the United States which are organized with volunteer chapters, which conduct quarterly support seminars for Blepharospasm patients. I am one of those Blepharospasm patients and was diagnosed accordingly and have been receiving ongoing medical treatment since 2002. This Foundation’s support services have been very helpful. Jim Rienhardt, St. Augustine, Florida

2 Jerry C.7

Volunteer

Rating: 5

Approximately 20 years ago I became aware that I have Blepharospasm. Since that time, I have been very much aware of this organizations ability to let the world know the effects this sometimes - debilitating condition can have on a person's life. A neurological condition is very difficult to control no matter where one is affected by it. But through continuous research being done, we all hope one day to find better ways to control this devastating problem. Research has much cost involved, and it is my hope that more people will become aware and be willing to support this most worthwhile Foundation. Lora Clark

2

Client Served

Rating: 5

The BEBRF serves the informational, emotional and research needs of patients suffering with Benign Essential Blepharospasm (BEB). It is very well run by volunteer management and staff workers. BEBRF Is still the only organization dedicated to this terrible and debilitating disease that robs sight from people with perfect visual acuity. Because BEB is a rare disease, few public funds are used to fund research. This means BEBRF must rely on private donations to continue supporting their members . Please consider donating to this worthwhile research foundation today.

2

Donor

Rating: 5

This Organization provides education and other resources to help those with Blepharospasm cope with its relentless symptoms.

3

Client Served

Rating: 5

BEBRF has been a wealth of information concerning my Benign Essential Blepharospasm condition. They have helped to get me treatment, doctors in my area and most of all knowing that others suffer from this relatively unknown disease.

I would not be able to function without their help. When you can not open your eye to see when doing the simplest of tasks as walking, there is a problem.

I have had BEB for approx. 17 yrs. It can be debilitating to some. It can end careers that people have worked towards retirement enjoyment.
Most doctors do not know what Benign Essential Blepharospasm is, let alone, begin to treat it.
I highly endorse this organization to provide medical facts and ways to cope with such an ailment. It also has support groups that help people that are just learning they have BEB.

3

Client Served

Rating: 5

Benign Essential Blepharospasm Foundation has helped me in numerous ways. They connected me with a free online chat with other victims of this malady. Through the site or the magazine I found out how much glasses for albinos help with the extreme light sensitivity. The latest magazine was especially helpful and interesting as a drawing of the botox injection sites was shown with an explanation of what causes some of the side effects It also directed me to a supplement which might be helpful in 'holding' the benefits of botox longer. I don't have Zoom access or I would be taking advantage of their training classes.

2 Jan L.3

Client Served

Rating: 5

Helpful all the way around. Helpful to many in my different support groups and I feel confident referring others to them for help.

2

Volunteer

Rating: 5

My husband and I volunteered at a symposium forBEBRF. We were able to witness how important this organization is to their patients. We were impressed by the sincerity and dedication of the Board Members and staff.

3

Client Served

Rating: 5

I was referred to the Benign Essential Blepharospasm Research Foundation (BEBRF) by the neurologist who diagnosed my Blepharospasm. I was able to call a local support group leader, who provided written information, helped me understand what to expect, and answered the many questions swirling in my head. BEBRF holds yearly conventions around the country that provide detailed and helpful information, updates on current research, and a chance to ask questions of the experts. During the pandemic, they've reached out with virtual support groups that are well-moderated and a lifeline to those of us with the condition. The staff is dedicated, very responsive, and helpful. I highly recommend the Benign Essential Blepharospasm Research Foundation to anyone who finds themselves suffering from this perplexing condition. They were a godsend for me.

3

Client Served

Rating: 5

BEBRF is so amazing! I first started having symptoms in 2008. Even though I doctored in Rochester Minnesota, I was not going to Mayo. So at Olmsted Medical Center, I saw an Optometrist, an Allergist, an Ophthalmologist, another Ophthalmologist, and a neurologist, who thought I should see a Psychiatrist !! Through my own internet search, I discovered BEBRF. From there I got the courage to ask for a second opinion and was thankfully referred to Mayo Clinic. Even though it took almost 2 years and a lot of mental anguish, I was finally correctly diagnosed with Blepharospasm and given botox injections. My life became bearable again! I have continued to go to Mayo Clinic for botox injections and have also had a myectomy surgery and am doing very well as of this date. I have put in my will to donate my brain to HTBRC (Harvard Brain Tissue Resource Center at mcLean Hospital in Belmont, MA.