Mattie Lou Koster - Founder of BEBRF


Posted by Moderator-JB , Oct 25,2001,12:01   Archive
October 25, 2001

Mattie Lou Koster, 89, founder of the Benign Essential Blepharospasm Research Foundation, died this morning at 3 a.m. Having developed blepharospasm in her mid-sixties she experienced the frustration of many years and many visits to doctors before she got a correct diagnosis. She decided to "do something about it," and the highly
respected foundation she started twenty years ago with herself as the only patient, now lists more than 5,000 patients plus hundreds of physicians.

Several years ago, when failing health caused her to give up daily operation of the Foundation, she retained the title of Chairman while her daughter, Mary Lou Thompson, assumed the presidency.

There will be a private family service in Beaumont, TX, with a public memorial service on Tuesday, October 30th at Trinity Methodist Church in Beaumont. In lieu of flowers the family requests gifts to BEBRF , Sabine Oaks Nursing Home or Trinity Methodist Church, both in Beaumont, TX. Correspondence can be addressed c/o BEBRF, P.O. Box 12468,
Beaumont, TX 77726-2468.

--modified by Moderator-JB at Thu, Oct 25, 2001, 12:26:38




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by June in Toronto (June Floyd,June in Toronto), Oct 25,2001,12:17 Top of Thread Archive
How sad, Judy - thanks for telling us. We owe so much to Mattie Lou for all that she did with the foundation, doctors and patients, like us. She will be very much missed and my condolences go to Mary Lou and her family and friends.

June in Toronto who is very saddened by this news.




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Re: Mattie Lou Koster - Founder of BEBRF --- June in Toronto
Posted by patti , Oct 25,2001,18:49 Top of Thread Archive
This is a sad day! Thanks for all you did for us Mattie Lou! We will never forget you! You will surely be missed!

--modified by patti at Thu, Oct 25, 2001, 18:50:15

--modified by patti at Thu, Oct 25, 2001, 20:39:11




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Joanne Matuzas , Oct 25,2001,12:49 Top of Thread Archive
Thanks so much for keeping us informed, Judy. I understand Mattie
had been quite sick for awhile. She will be missed. We are grateful for her perservance and dedication in establishing the foundation for this disorder which has helped so many of us and we know Mary Lou will continue to provide excellent leadership.

Joanne M. San Diego, CA




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Lynn Yarbrough , Oct 25,2001,12:53 Top of Thread Archive
How sadly we recall her: a courageous, clear-headed, tough-minded woman who would not take "I don't know" for an answer.

Mary Lou Thompson, hold your head up high! The banner is yours to carry. Continue, as you have, to lead and teach us. We love you.

--- Lynn




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Nilda Rendino , Oct 25,2001,14:59 Top of Thread Archive
I'm so sad that Mattie Lou won't able to make it to the conference in Houston next August. She had hoped to be well enough to be there with us. She will be there in spirit I know. In her honor and for ourselves, we have to dedicate ourselves to do all we can to make help to educate about blepharospasm, support patients and their families, and to find a cure. She faced the same problems we do and look at what she accomplished. Mary Lou has lost her mother, her husband and her brother in a very short time. Our prayers go out for continued strength for her and her family.



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Shirley-Arkansas-USA , Oct 25,2001,15:45 Top of Thread Archive
I was so sorry to hear the news of Mattie Lou's death. She has done so much for all of us and I've never met her. I wish that I had. She has touched thousands of lives-one of which is mine and I will forever be grateful to her. Think of where we would be today if she had not persevered and started the foundation and brought doctors and patients together to help us with this disorder. I wouldn't have handled my own BEB very well if she hadn't laid the groundwork for me to find the information that I needed to deal with this. I am indebted to her.
We love you Mattie Lou-I hope that you are listening. You've done good!

Shirley in Arkansas




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Christel-California , Oct 25,2001,16:58 Top of Thread Archive
Judy, thank you for informing us of this sad event. I had always hoped to meet this lady, who did so much for us, one day. I'm really glad to have her her portrait in the cookbook, a constant reminder of the lady who brought all of us together. She will live on in the hearts and minds of all the people she touched through her dedicated actions.
My condolences to Mary Lou and her family.

Christel




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by coleen dennis , Oct 25,2001,19:04 Top of Thread Archive
I was so sorry to hear of Mattie Lou's passing. I never met her but I can just imagine want she must have been like. She was a true American who knew that "it only takes 1" to accomplish great feats. One who dreams that anything is possible. One who has a vision and doesn't let anything stop her. One who persists so that all of us could reap the benefits of her compassion, knowledge and hard work.

I believe she is up there watching us and I hope I find a little bit of Mattie Lou when I need it to weather the storms and come out on the sunny side.

May she rest in peace.

Coleen in Central PA.




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Re: Mattie Lou Koster - Founder of BEBRF --- coleen dennis
Posted by colleen , Oct 25,2001,19:52 Top of Thread Archive
I am very sorry to hear of Mattie Lou,s passing wish i could have meet her.I will always be very grateful to her for all that she did to help all of us.What a great lady.
My Sympathy to her family.
Colleen



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Dee in OR , Oct 25,2001,20:14 Top of Thread Archive
I'm sorry to hear about the passing of Mattie Lou. We would all be in the dark if it hadn't been for her courage. Thank you Mattie Lou.

Dee in OR




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by MaryNY , Oct 25,2001,20:37 Top of Thread Archive
I am so sorry to hear about Mattie Lou Koster. Where would we all be if she had not stepped up and demanded to be heard? The world can be forever grateful to have had such a strong person to support all of us. My sincere sympathy to her family, and to her family of blephros around the world, who will surely remember that she made it so much easier for all of us. Mary



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Mindy , Oct 25,2001,20:40 Top of Thread Archive
I'm so sorry to hear the passing of Mattie Lou.
What a courageous and amazing woman.
I'm so thankful for all she has done to pave the way and
I'm grateful to Mary Lou who continues to help us.
Mindy in NY



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Edith Nalepa (edith nalepa,Edith Nalepa), Oct 25,2001,21:21 Top of Thread Archive
Bless you Mattie Lou, we all owe you so much, I am shedding tears as I write this, you will be greatly missed. Edith In Fl.



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Delaine Inman , Oct 25,2001,22:10 Top of Thread Archive
Thanks Judy for letting us know so quickly. We owe her so much, what a guttsy lady to have the courage to do what she did for all of us. She is an example and role model of what a difference one person can make in thousands of lives. My prayers to Mary Lou and all her family and friends. I am so sorry for her loss. It is our loss too. Thank you Mattie Lou; now we have one more Angel watching over us. I will let as many people know by email and phone tomorrow.



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Sally - in - Idaho , Oct 25,2001,22:14 Top of Thread Archive
Thank you for letting us know, Judy. Mattie will be remembered as a courageous, feisty woman who would not accept having this disorder/ disease brushed aside, and continued to fight for more research even as she grew older.

The angels are surely welcoming her into their arms now. May they comfort Mary Lou and the extended family, as well as the thousands of blephros who owe such a debt of gratitude.

Sally in North Idaho who would have still been floundering around without the guidance and help of the BEBRF and this BEB BB.




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Re: Mattie Lou Koster - Founder of BEBRF --- Sally - in - Idaho
Posted by Lile , Oct 26,2001,01:30 Top of Thread Archive
Mattie Lou,I wish I had met you.You paved the way for us ,I thank you.The gates in Heaven are open for you and the Angels are joyfully singing.In Heaven there is no such disorder as Blepharospasm,Meige,dystonia,etc.You can open your eyes with ease.You did so much for us in these world .Please now be our Guardian Angel.My sympathy to Mary Lou ,her family and friends.Lile-Tx.



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by kathy , Oct 26,2001,03:28 Top of Thread Archive
how sad! may she be pleased knowing that she helped us so and had the courage to start this foundation.



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Alan Phair , Oct 26,2001,08:34 Top of Thread Archive
It is such a shame that a person such as Mattie Lou has to leave us in body but I am sure that her spirit will remain among us for as long as we live ourselves. Although I never met her personally, I had the pleasure of speaking with her on numerous occasions. Whenever I needed some advice or an uplift, I would give her a call. When I was first faced with deciding on my Upper Myectomy and could not decide who to have do the operation, she was a guiding light to my making the decision I did. She would not pit one doctor against another but would make one weigh the differences for oneself so that the outcome would become apparent.

It was through her efforts as everyone knows that this foundation got started and it should be through her memory that it should continue even stronger. I will miss calling her and I hope that everyone who ever came in contact with her or her works remembers her in an appropriate way .......Sadly, Alan Phair

--modified by Alan Phair at Fri, Oct 26, 2001, 08:36:20




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Corrie Thomann , Oct 26,2001,09:08 Top of Thread Archive
I am so sorry to hear of the passing of a lady who has helped so many of us with this disorder. I will forever be grateful for her perseverance and dedication in establishing the foundation, She truly was a pioneer. My condolences to Mary Lou and her family.


Corrie in S.C.




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Cynthia , Oct 26,2001,16:21 Top of Thread Archive
I have not had the opportunity to meet Mattie Lou, but have seen her picture many times and have heard enough of her life story to know that we are indeed deeply indebted to her for her leadership and success in founding the BEBRF. Thank you to Mattie Lou!
With prayers for Mary Lou as she is again faced with the loss of a dearly loved one and may she emerge from this grief with added strength.



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by r coutant , Oct 26,2001,17:12 Top of Thread Archive
I CANNOT IMAGINE TRYING TO COPE WITH BEB WITHOUT THE
BEBRF. I AM INDEBTED TO MATTIE LOU KOSTER.

RHONDA COUTANT




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Pat Soulia , Oct 26,2001,19:21 Top of Thread Archive
Thank you Judy for your message about Mattie Lou Koster. She certainly has touched many people around the world and has helped us in so many ways to cope with a difficult disorder. My sincere sympathy to her family during this difficult time.
With prayers,
Pat Soulia in PA



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Re: Mattie Lou Koster - Founder of BEBRF --- Pat Soulia
Posted by barbara hanratty , Oct 26,2001,20:40 Top of Thread Archive
Thank you Mattie Lou for your kindness, courage and perseverance, from which all of us with BEB have benefited. You truly did God's work in this life, and I know you have a very special place in heaven.

My sympathy to Mary Lou and her family.

Barbara in NY




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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Joann Humphrey , Oct 27,2001,16:55 Top of Thread Archive
I'm so sorry to hear about Mattie's passing on. It is wonderful what she has done for the BEBRF and now she no longer has to suffer from the problem. My sympathy goes out to Mary Lou who is doing a wonderful job as president.
Joann who just returned from a wonderful vacation in Ariz, & Southern Utah



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Re: Mattie Lou Koster - Founder of BEBRF

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Tim Johnson-PA-USA , Oct 27,2001,20:44 Top of Thread Archive
Martha and I send our sincere sympathy and prayers to Mary Lou and family at this time of sorrow. What a special person Mattie Lou was. I owe so much to her in regards to providing the BEBRF, which has been of great help in battling the same foe that afflicted her. Her labors are done, yet her work goes on in the capable hands of her daughter and others.

Having never met Mattie Lou, I was privileged to meet Mary Lou and her daughter at Phoenix this past August. Thank you, Mary Lou, for being there to carry on for your blephro "family." We need you. May your great loss be filled by the comforts of God.

Tim Johnson, whose mother is also 89 years of age and in a nursing home with advanced Alzheimer's.




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Mattie-Lou

Re : Mattie Lou Koster - Founder of BEBRF --- Moderator-JB
Posted by Moderator-JB , Oct 29,2001,13:26 Top of Thread Archive
When you are feeling very frustrated with Blepharospasm and nothing seems to help, remember Mattie Lou and her fighting spirit.

If she could do it, so too can we.

Judy




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