California Sons in Retirement (SIRs), Part 3

Third of a four-part series dealing with retirement.

Update: When we last met our retired hero, Rob, he had just returned from his first-ever SIRs meeting.

Rob’s mind was a bit muddled. The meeting had been OK. The guys he met had all been friendly and helpful. The lunch itself was about a six on Rob’s scale of zero to ten. The meeting was precise, and the boss at the head table, who apparently held the title of Big SIR, had kept things moving – a trait Rob appreciated. He had enjoyed the speaker. Once again, the presentation had been about the right length – not too long – but entertaining enough to keep his interest. One of the officers had given him an application blank with only a mild amount of perceived pressure.

So, considering all this, what stood in Rob’s way of filling out the application and signing on?

In short, he missed a younger crowd. It was a step for Rob to admit he fit into the group. He needed a little push, and how was he to get it?

Well, when he left the meeting he had been given a monthly newsletter. As he paged through it he began to find himself leaning toward joining. Then a bright idea came to him. He looked at the newsletter and found the guy in charge of golf. He recognized that he would like some of the other activities as well. It would be fun to get back to bridge, maybe a little poker, and the idea of an exploratory walk with the group appealed – but the true test for Rob would be golf.

He called the person listed as chairman of golf and lied just a bit by telling him that he was joining the branch and would love to meet some of the men for a game of golf. The chair told Rob how to log onto the branch golf web site and how to register to find the upcoming events. Then he said, “Rob, because you’re new I will put you with a group of men with about your skill level until you are properly registered.”

Well, the golf match did it for Rob. He arrived about a half hour before his tee time. The three other guys he was to play with greeted him. He didn’t have to hassle with tee times, and the other players were great. (By the way, he beat two of them which helped.) And, the price was under what he paid on the weekends.

The three men all loved golf, talked up their SIR branch, and were loose and easy to be with.

It didn’t take Rob long to fill in his application and send it along. After all, they were scheduled to play again next week. He might just check out the walking group. That one didn’t even require a sign-up sheet.

YOU Can Make a Difference for Chelsea’s Hope: September 26th

Five years ago, Chelsea Gerber, 19, a Danville resident, was about to begin Monte Vista High School, becoming a more independent teen, enjoying friends, and living a life filled with promise. Today Chelsea, 100% dependent upon others, is confined to a wheelchair and is unable to walk, talk, or adequately think. Chelsea has been diagnosed with Lafora.

Lafora is the most virulent, progressive and degenerative form of epilepsy known and usually strikes young healthy kids in their early teen years. With its devastating nature, Lafora slowly tears away their ability to walk, talk and function. Children with Lafora suffer from rampant grand mal seizures, loss of cognition and generally, within 10 years, they lose their life. LAFORA HAS NO CURE.

What transpired between Chelsea’s diagnosis in January 2006 and now has been the birth of Chelsea’s Hope: Lafora Children Research Fund. Chelsea’s Hope began out of helplessness, isolation, devastation and a need to believe in miracles. With just a few hundred diagnosed cases of Lafora worldwide, there was little information available, no resources for families, and essentially no funding for research.

Chelsea’s Hope, an IRS non-profit corporation, is the only organization dedicated to connecting families, creating awareness and raising funds for Lafora research. Within these past several years, our organization has grown into a community of families dedicated to emotionally supporting one another, who have become in their own right, experts in the care of their children’s medical needs.

We have developed a strong bond with the few leading Lafora researchers in the world, presently at UCLA Medical Center and Sick Children’s Hospital in Toronto, helping them by bringing forth an awareness of Lafora publicly, and thus, have been instrumental in helping families receive long sought after diagnosis for their children.

We are proud that Chelsea’s Hope has raised over $225,000 for Lafora research. With these funds, protocols have been supported which has led to the recent FDA approval for the drug, Gentamicin, to be used on Lafora patients, those with certain mutations. This long awaited approval represents HOPE, while it is not a cure, it promises to halt the progression, temporarily, while a search for a cure continues. This is the first medical treatment that will be used on Lafora children as opposed to medications administered solely for seizure control.

We are doing what we can, with a mournful yet empowered heart, to make a difference in Chelsea’s life and every other child’s life that is affected by Lafora. What these children have lost should not happen to any other child. No parent should have to wait years for a diagnosis only to hear, “I’m sorry, there is no cure.” It is our dream, our wish and the reason for our existence, that one day when a child is diagnosed with Lafora, that instead of hearing the word fatal, parents will learn there is a treatment.

Last year, at our first fundraising event, Dr. Escueta of UCLA, stated in his 20 years of Lafora research no one had ever raised funds to support this work. He also mentioned that if medical research funds were made available, it is believed a cure could be found within a few years.

Please join us for the Premiere of The Chelsea’s Hope Documentary Film, meet the researchers and participate in keeping hope alive at our second annual fundraiser September 26, 2010 at the Blackhawk Museum.

Chelsea’s Hope brings hope to many and, is indisputably, making a difference for children suffering from Lafora.

To learn about Lafora, read about our children, make your donation, and attend our event, go to www.chelseashope.org.