TESTIMONIALS
Hear from some of our supporters about what BEBRF means to them.
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.
Monica
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.
Anonymous
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.
Norm
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.
Anonymous
My husband and I volunteered at a symposium for BEBRF. 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.
Ann
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
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
I don’t know if you remember me, but I wanted to thank you for giving me my life back.
I had known that I had blepharospasm and my doctors did as well but none of us did anything.
I contacted you after I fell off my deck because I was going through my life with my eyes closed. I suffered from a tibial plateu fracture from that injury.
After you and I spoke, I contacted Dr. Jolly a local doctor that does botox injections for blepharospasm. He was the very first doctor recommended to me but for whatever reason, I saw every doctor in the practice except him.
I have been getting botox injections for almost two years. From the start, it was like a miracle. I could really see and drive and live without embarrassment and frustration.
I keep a video that I took of myself before in my phone and look at it as a reminder. Thank you so very much for all that you did for me!
God bless you for all that you are doing!
Bobbi
As I’ve said before, when I receive your newsletter I just have to stop right then and read “Ask the Doctor.” Then I read the Patient Stories. Start then from the beginning and read it all. So helpful.
I don’t have a smart phone and I use an old desktop computer. I miss out on a lot of new things, but thankful for what I do have.
I appreciate all of you and what you do for us so very much. Keep up the good work.
I celebrated my 94th birthday in Feb.
Vonnie