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Six Months after Luke was born, I felt impressed to host a Tuberous Sclerosis Benefit to increase awareness and raise money for research. We put together an honorary committee and proceeded forth with the idea of a Jewels and Jazz benefit for Tuberous Sclerosis. The benefit included a gala dinner on April 11, 1997 at Moody Botanical Gardens that included a silent jewelry auction. In conjunction with the benefit we also had a vehicle raffle for a Ford Explorer. Over 150 of our friends and family rallied behind the cause.

The trademark art of the benefit is the above Hope for Peace Print by Margaret Earthman. Margaret Earthman was the first person to financially encourage us in the pursuit of this goal. It was natural then when we needed a trademark of the benefit to contact Margaret. The Hope for Peace print is in the possession of Todd and Deanna Runyan. 19x26 Inch Event Posters were made of the print, along with it being featured on the cover of the invitations, program, thank you and inspiration of the hand made quilts made for sponsors. The dove in the middle represents peace and the confetti in the background represents hope. This is Hope for Peace for the suffering of those afflicted by Tuberous Sclerosis. Following is a photo of Margaret Earthman. She resides in Galveston, Tx and is the grandmother of seven grandchildren. Her work can be viewed at Eibands Gallery, she will be the featured artist at Galveston's Art Walk in June at Leslie's Gallery. A many special thanks to Margaret and all of her support.

The benefit was more than I ever dreamed. We had 267 people attend the gala and sold 2158 raffle tickets. We grossed over $90,000 and netted $70,000. The Ford Explorer vehicle raffle was drawn that evening. The winning ticket drawn by Margaret Earthman (the artist of the painting) was from a sponsor table that evening that had written the Luke Foundation as the winner of the vehicle. That of course translated to an increase of our net receipts. It was very exciting. There were three $5,000 tables sold, one $2,500, three $1,500 and a total of eighteen $600 tables. The evening included a silent jewelry auction that had gross receipts of $13,000, formal served dinner and program about TS. Dr. Northrup was honored for her ten years of dedication to Tuberous Sclerosis by Barb Witten with a quilt hand made by our family and she later spoke about her research. $5,000 sponsors were also given a quilt and a framed print of the Hope for Peace print by Margaret Earthman. The $2,500 and $1,500 sponsors were given a framed print. Everyone enjoyed music touchingly performed by Gina Yockey and Randy Hughes that was written and composed by a child with TS, Mark Lerner, that could not attend and Michael Reese. The Pat Williams Jazz Quartet played background music throughout the cocktail hour and dinner.

We actually sold over $54,000 in raffle tickets. Amazing eh? That wasn't by one single person either. It represented the combination of many many different people selling raffle tickets. The $54,000 represents a lot of $25 tickets. Not major contributions. It was just amazing to see all of those small checks accumulate to the final total. It was a testimony to me of how all of our small efforts can truly bring about great works. You are all responsible for that.

I could not possibly thank everyone completely enough. I am sorry to be personal but I remember about six months ago, when I realized that a cure or treatment for Tuberous Sclerosis could possibly be one day available. I at that time wished that I could be a researcher and use my hands to find a cure for the children. I cried to God to please aid the cause. I also wanted so badly to do something to help these children and knew that since I couldn't do research that I wanted to let other researchers know how important their work was to the families. I wished that I had the kind of money to make a contribution to fund the research but knew there was no way. Well I want to let you know that your efforts and involvement brought about the miracle that answered those prayers. Often God uses us to administer some of his miracles. Thank you for listening and acting.

Not only are we able to absolutely fund at least one researcher but we funded a book sharing stories for the families affected by TS. We also used seed money from this benefit to fund a National TS Parents Symposium. There are a lot of possibilities. $35,000 is restricted to NTSA for a research grant and the other $35,000 is designated for research money for Dr. Hope Northrup. I feel that along with your assistance the gala laid a foundation that illustrated our dedication and increased awareness to many of the people that we want to appeal to. I will also continue to speak to groups about Tuberous Sclerosis and try to increase awareness through the media.

We intensely want to thank each one of you and your efforts to fight against TS. It is happening. Thank you from the deepest part of my heart. Your faces are etched in my mind and I am sincerely grateful to you for the time that you sacrificed from your families as you worked on this project. Not only is the monetary results a measure of success but more than anything the increase of awareness is immeasurable. Thank you again for all of your love and support.

There are now lots of opportunities to host an event to raise money for Tuberous Sclerosis or to support those that are raising money. On the TS Alliance web site at www.tsalliance.org , they help you from hosting a walk-a-thon to selling wrapping paper or a simple mailing to friends and family. I encourage you to participate. I felt that it brought control to my life that was out of control. It helped me to feel that even though I may sit here and struggle watching my child experience the trials of having Tuberous Sclerosis but to feel instead that I am making a difference to increase the quality of life of those individuals and families with Tuberous Sclerosis. Lots and Love and Best Wishes,

Deanna

Disclaimer
This home page is intended to be a family resource for families affected by Tuberous Sclerosis. It does not intend to constitute medical advise. Viewers are warned not to take any action with regard to medical treatment relying on the information provided on this page without first consulting the patient's physician.

Luke's Tuberous Sclerosis Page

does not recommend any treatment or health care plan.

Deanna Runyan-Wall
E-mail address: deannadawn@lukets.org

Last updated: April 5, 2008 Created: December 5, 1996

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