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Brian's mother
Mary Ann Miller gave this speech Sunday at the 2004
Brickyard Crossing Pavilion 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 Gehrig'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.
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Please
join us at our main event for 2006 - the
"Brian's Wish Rocks BOO BASH" at the MUSIC
MILL - Indianapolis
Our special thanks to you all,
Brian's Mom |
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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 501©(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
Lou Gehrig was diagnosed with ALS in the 1930's.
Here we are almost 70 years later, AND WE STILL DON'T KNOW WHAT
CAUSES IT! Or cures it! All we can do is make the
patient comfortable.
You can find more information about Brian, Brian's Wish and ALS
at: www.brianswish.com.
Donations may be made to:
Hendricks County Community Foundation
5055 E. Main St. Suite A
Avon, IN 46123
317-718-1200
www.hendrickscountycf.org
Please write Brian's Wish Fund in the
memo.
Awareness
events for ALS and Brian's Wish:
May 2002:
27
out of 33 cars at Indy 500 had Brian's Wish decals on them
September 2002:
Last IRL race in Texas - Phil Casey Golf Outing
Eddie Cheever chose Brian's Wish as one of the charities
$17,500 was donated to ALS thru Brian's Wish
to help increase awareness and for research
May 2003:
May 1 and 2 -- Mini-Marathon - booth to distribute brochures
about Brian's Wish, Sarah Fisher and Vitor Meira, IRL
drivers spent some time with us signing autographs.
Robbie Buhl's 2002 show car was on display.
May 21 -- Brians Wish at Community Day at Indianapolis Motor
Speedway
Visit Brians Family and friends at the entrance to the Red
Bull Team Cheever garages
during Community Day at Indianapolis Motor Speedway
May 23 -- Brian's Wish Night at the Indianapolis
Speedrome
(Indy 500 Weekend)
Friday, May 23, 2003 Racing starts at 7:00pm
802 S. Kitley Ave.
317-353-8206
TBA - 1 or 2 IRl race drivers will be with us for an autograph
session.
Tickets in advance - $5.00 each for a $10.00 ticket.
May thru Oct -- IRL Crew will promote
Brian's Wish at each race.
June 2003:
June 19 -- Lou Gehrig's 100th Birthday Celebration at AAA
baseball parks.
Check with your local AAA baseball stadium or www.alsa.org
for details.
July 2003:
July 26 -- Brian's Wish Benefit Concert - "Better
than Ezra"
Presented by A.G. Edwards
Murat Theatre/Egyptian Room
502 N. New Jersey
Tickets in advance - $50.00 each
(Package of 12 available for price of 10)
October 2003:
October 5 -- Indianapolis Walk to d'feet ALS
Carmel Civic Square
Carmel, IN 46032
Check with www.alsaindiana.org
for details.
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