Brian’s Wish

[raschu75]

Since track forum changed from .com to.org. Information about Brian’s Wish has disappeared or I can’t find it. If possible could you give history of Brian’s Wish. Thank you.

[Turn13]

Brian's mother Mary Ann Miller gave this speech Sunday at the Brickyard Crossing Pavilion 2004 Season Opener Party at Indianapolis Motor Speedway:

Dear Family and Friends:
On behalf of Brian, his family and all of the ALS community - we wish to thank all of you for your continued interest and support of Brian, Brian's Wish and ALS.

We'd especially like to thank Brenda Stone and Andy Marcus of the Brickyard Crossing Hotel and Restaurant at the Indianapolis Motor Speedway for once again inviting the Brian's Wish Foundation to the Indy Racing League IndyCar Opening Party for the Homestead Race today.

Our son, Brian was a young man like many of you - he had a family, moved up in his job and was vice president of his company. He was looking forward to raising his young son, helping him thru school, coaching him in sports like the ones he had been in - baseball, wrestling or football; teaching him about computers, the field Brian was in and yes, taking him racing. Instead at the age of 33 he began experiencing some strange things - stumbling, dropping things, dragging one of his feet, and falling. After visiting three doctors he was told to go home, get his affairs in order - that he had 2 - 5 years to live.
Brian had been diagnosed with ALS, Amyotrophic Lateral Sclerosis, otherwise known as "Lou Gerhig's disease". As his body progressed with this disease the nerve endings died, muscles deteriorated; he became paralyzed and knew that he could eventually suffocate. All the while his mind was still sharp as normal, so he knew all that was going on and would occur.

Some patients may live only six months to two years after they are diagnosed. The disease usually affects these patients in the throat or lung area first, meaning, they are unable to speak, swallow and then unable to breathe. Fortunately for us, Brian lived five years after his first symptom. He kept his unique sense of humor and chose to "live" with ALS, continuing to do the many things he enjoyed - just a little differently.

Some of what he enjoyed was music and racing.
His friends wanted to continue to do these things with him. They soon realized in order to do so they would have to take care of him, kind of like a small child. But Brian was always adamant that they do things HIS way! His friends took him to the John Mellencamp New Years Eve Concert at Conseco Fieldhouse. By this time he was in his electric wheelchair which made maneuvering thru the crowds very interesting. They also took him to the Jazz Fest at White River State Park, even in the rain!
I think his friends wanted to take him to the races because the handles on the back of his wheelchair were a great way to carry a cooler of beer plus, with his handicap van, they could sure park a lot closer to the track! As we continued to walk with Brian thru his disease, his friends were an integral and important part of Brian's care-giving team, sometimes giving the family needed relief on weekends.

The last five months of his life were spent at St. Vincent's Hospice in Indianapolis. Instead of the dark and somber days he expected his days at hospice turned out to be unbelievable!

At first he was scared, afraid of the unknown and felt he would be all alone.

AND THEN BRIAN MET BARB! Although his health was rapidly declining, his spirits were lifted and he had reason to smile again.

Many of you are aware of how Brian's Wish came to be - when one of his nurses, Barb Lyons - aka "Aunt" Barb to her friends at www.trackforum.com, realized Brian's love of racing. They even shared a favorite driver - Eddie Cheever.

Barb mentioned Brian's story - that he was a big race fan and IndyCar fan, on Track Forum and other IndyCar areas on the internet. Interest grew, and in a matter of days Brian had drivers, owners, and many just plain old race fans like him, coming to visit - quickly his room began to look like a racing museum!
This really did bring a smile back to his face!
Many asked what they could do for Brian. Since his needs were taken care of, he said that possibly, if they really wanted to help, they could help him spread awareness of his disease - Lou Gehrigs Disease - ALS. Soon cars were "wearing" decals, a website was designed for Brian and his Wish as well as shirts and hats. With this the realization that maybe, during this final stage of his life, with the help of his new friends, just maybe - he could make a difference.
After five months I think Brian felt he had accomplished all that HE could do - the rest was up to us! He died on Carburetion Day, 2002.
And at the Indy 500 that year, 27 out of 33 cars wore those decals!

Brian's Wish is not just about Brian Hall. It is about all ALS patients.

A few ALS facts:
- ALS can afflict any man or woman, generally between the ages of 40 and 75.
- ALS is not a rare disease. It strikes as many people as does multiple sclerosis and four times as many as muscular dystrophy. (Brian felt that there is not enough awareness of ALS so the research dollars go elsewhere).
- With recent advances in improved medical care, many patients are living longer. BUT there is still no break-thru in finding a cause or a cure. (Lou Gehrig was diagnosed over 60 years ago, and we still don't know what causes it)!
- We are fortunate to have an ALS specialist in Indianapolis at the I.U. Medical Center where they are currently running three new research trials.
- We are also fortunate to have a local ALS Association which provides support for both the patient and the family. Many of you have joined us each fall for the Walk to D'feet ALS at the Carmel City Center. We are most happy to announce that the Walk for 2003 was our most successful in four years; with over 800 walkers and over $100,000 in donations!
- ALS occurs throughout the world - with over 5,600 newly diagnosed each year in the United States. Currently there are over 160 patients and families being treated thru our local ALS Association and the I.U. Medical Center.
- ALS is not just Lou Gehrig's disease...it's anyone's.
BRIAN'S WISH is: To make the world more knowledgeable about ALS, a terminal disease, and the effects it has on the patient, family, caregivers and friends and therefore to help provide more interest and funding for research facilities to find a cure for this terrible disease.
The "business" cards, pins and brochures that we have handed out today are for awareness. Please share these so others may read Brian's Wish website, become aware of ALS and know the story of how the IRL racing community became connected with Brian, Brian's Wish and ALS.
We have been blessed with the support of others in the IRL racing community, who have had loved ones who have also suffered with ALS. A few of those are:
Brenda Stone, Brickyard Crossing; Glenn H, Camp 'n Brew; Mike King, IMS Radio and of course, Sid Collins.
We want to thank all of you for coming and allowing Brian's Wish to share with you today.
Ways you can help:
With the help of our friend, 1998 Indy 500 race winner, Eddie Cheever, we found White Lick Heritage Community Foundation. Thru this Foundation we have set up a non-permanent fund and all funds can be used to help promote community awareness of ALS/Lou Gehrig's disease. The Foundation has been declared a 501آ©(3) charitable organization by the Internal Revenue Service and donations to Brian's Wish Fund thru White Lick Heritage Community Foundation will qualify as a tax-deductible gift.
Brian's Wish is this:
To make the world more knowledgeable about ALS, a cruel terminal disease, and the effects it has on the patient, family, caregivers and friends and to help create awareness and more interest, and provide funding for research to find a cure for this terrible disease.
How can you help? Please share Brian's story so others will know about this disease. Perhaps you may want to participate in some of the Awareness events listed below. And of course, donations are always welcome!
On behalf of Brian, his family and all of the ALS community, we wish to thank all of you for your interest and support of Brian, Brian's Wish and ALS. We, his family, want everyone to know that with your help, Brian's Wish lives on!!!
Sincerely
Mary Ann Miller
Brian's Mom

[nm]

Brian brought out the best of best sides in the debate over the future of Indy car racing.