The Beyond Batten Disease Foundation
Dear Friends,
I would like to introduce you to our son, Will.
He is an outgoing, green-eyed, 7-year old kindergartener who loves to smile and
greets everyone with a hug. He
plays soccer, swims and adores his two little brothers. He loves to give “Eskimo
kisses, “and say his prayers.
He collects Build-a-Bears, hunts for “waterhorse eggs” at the Beach and loves to
watch the zebras at the zoo. His
future was bright, his goals limitless until a life-changing day in June, 2009:
The day our son was diagnosed with a fatal, rare, genetic
neurological-degenerative disorder called Juvenile Batten Disease.
It was unimaginable to comprehend that a horrible disease we had never
heard of, was planning to ruin my son’s childhood by stealing his vision, mind,
mobility and ultimately, his life.
Juvenile Batten is a fatal, inherited disorder of the nervous system affecting 2
to 4 of every 100,000 births in the U.S.
Early symptoms of this disorder usually appear between the ages of 5 and
10, when a previously normal child begins to develop vision problems or
seizures. Over time, affected children suffer mental impairment, worsening
seizures, and progressive loss of vision and motor skills. Eventually, they
become blind, bedridden, and physically and mentally incapacitated, requiring
24-hour care. Batten disease is fatal, often by the late teens or early
twenties. Over the past year, Will has gone legally blind, suffers short-term
memory loss, occasional stuttering and extreme anxiety.
With no current treatments or cure, this is our Will’s prognosis, and at
the moment it is grim.
We are in a literal race against time.
But, there is HOPE. Our family has
partnered with the Beyond Batten Disease Foundation.
Beyond Batten was started in August of 2008 by the Benson Family of
Austin, TX who also have an affected daughter, similar in age and symptoms to
Will. The foundation is currently funding a group of Italian researchers at
Texas Children’s Hospital who are working on a developing a potential treatment
for Batten disease. Together,
we will work to accomplish our shared mission:
TO ERADICATE JUVENILE BATTEN DISEASE.
HOPE has been the theme of our journey, which began with our first major, local
fundraiser “HOPE Under the Stars” for the Will Herndon Fund for Juvenile Batten
Research and the Beyond Batten Disease Foundation that took place in November,
2009. At this event, we were able to share Will’s story and our mission to more
than 600 guests and raise nearly $220,000 for research.
Our hope is to continue this momentum with the 2nd Annual
Brake Specialists Plus “HOPE on the Green” Charity Golf Tournament and Dinner to
take place on Thursday, September 16, 2010 at Grey Rock Golf Club in Austin,
Texas.
Monies raised will be donated to fund researchers working to find a treatment
and/or cure for Juvenile Batten disease right now.
With no current treatment or cure, our HOPE rests heavily with the
privately funded researchers dedicated to fight this disease.
The more researchers dedicated to this rare disease, the higher the
chance of a development within our children’s lifetime.
Our goal is to save Will and the hundreds like him.
Failure is not an option; our son’s life depends on it.
On behalf of our family, thank you for your interest, prayers and continued
support of The Beyond Batten Disease Foundation.
Kindest regards,
Wayne and Missy Herndon
The 2nd
Annual Brake Specialists Plus “HOPE On The Green” Charity Golf Tournament
benefitting
The Beyond Batten
Disease Foundation
September 16, 2010 1:00pm at Grey Rock Golf Club in Austin, Texas
2010 Golf Underwriting Opportunities
HOPE Tournament Shirt Sponsor -$7,000
– SOLD OUT
·
One (1) four-player team
·
Company logo/name will be
featured on the sleeve of each of the Nike golf shirts to be presented to
participating golfers.
·
Recognition of name/logo on
custom sign placed in high-traffic areas during registration, dinner and on the
course at the most prominent tee boxes.
·
Name to be included on all
printed materials and media information (upon signed agreement).
HOPE Tournament Golf Ball Sponsor - $2000
·
One (1) four-player team
·
Logo on all golf balls given
in tournament gift bags and prizes
·
Sponsor recognition on custom
signage at the dinner and prominent areas of the event.
HOPE Tournament Pre-Game Lunch Sponsor - $1500
·
One (1) four-player team
·
Sponsor recognition on custom
signage at the dinner and prominent areas of the event.
HOPE Tournament Gift Bag Sponsor - $ 3000
·
One (1) four-player team
·
Logo/Family name on gift bags
and/or goodie bag items (approx. 150) to be given to participating golfers.
·
Custom sign with your
logo/name at the Gift Table.
·
Sponsor recognition on custom
signage at the prominent areas of the event.
HOPE Tournament Dinner Celebration Sponsor -
$3000
·
One (1) four-player team
·
Sponsor recognition on custom
signage at the dinner and prominent areas of the event.
HOPE Tournament Golf Cart Sponsor - $2000
·
One (1) four-player team
·
Logo/name on signage at each
golf cart.
·
Sponsor recognition on custom
signage at the prominent areas of the event.
HOPE Tournament Beverage Station & Cart Sponsor -
$1,000 (6 available)
·
Custom signage with logo/name
at one of six beverage stations or carts (your choice).
First come, first serve basis.
·
Sponsor recognition on custom
signage at the prominent areas of the event.
HOPE Tournament Hole Sponsor - $200
·
Logo/name on custom sign
placed at one (1) tee box
·
Sponsor recognition on custom
signage at the prominent areas of the event.
Four Player Team - $600
Individual Player - $150
Dinner Ticket Only -$30
Team Registration fee includes a goodie bag, prizes, unlimited beverages,
domestic beer, lunch and dinner.
Note: Commitment
form and payment must be received on or before Friday September 3, 2010 for
guarantee of inclusion in signage and presentation.
The Beyond Batten Disease Foundation,
which is a registered 501(c)(3) nonprofit organization.
Contributions are deductible to the extent allowed by law.
Tax ID# 26-3223661.
www.willherndon.org
www.BeyondBatten.org
The 2nd
Annual Brake Specialists Plus “HOPE On The Green” Charity Golf Tournament
benefitting
The Beyond Batten
Disease Foundation
September 16, 2010 1:00pm at Grey Rock Golf Club in Austin, Texas
2010 HOPE Golf Underwriting/Player Commitment Form
Underwriting
Golf Ball Sponsor -$2,000
Lunch Sponsor $1500
Gift Sponsor - $3,000
Dinner Sponsor -$3,000
Golf Cart Sponsors-$2,000
Beverage Station Sponsor-$1,000
Beverage Cart Sponsor -$1,000
Hole Sponsor -$200
Registration
Four- Player Team -$600
Individual Player -$150
Individual Dinner Only -$30
I cannot attend; please accept my donation of $____________ (Please check
below and fill out form of donation payment.)
Team Contact Name:
Company Name:
Team Contact Address:
Team Contact Phone:
E-Mail:
____________________________________________
For Sponsorships, please print your name/business as you would like it
acknowledged on signage:
________________________________________________________________________________________________________________________
Enclosed please find a check for $____________ made payable to “Beyond
Batten Disease Foundation.”
Please charge my credit card using information listed below for the
following total amount: $____________
Credit card:
Visa
Mastercard
American Express
Card number:
______________________________Exp. Date:
_____________ CVV2/CVC2 Number*:
___________
*4 digit number on the right above the embossed number on
the front of American Express cards and 3 digit number on
the back of Visa/MC cards on the right hand side of the
signature panel.
Name on card:
____________________________________________________
Billing Address:
___________________________________________________
Signature:
_______________________________________________________
Circle/Mark Shirt Size
Player Names:
_______________________________________________________
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XL
XXL
_______________________________________________________
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L
XL
XXL
_______________________________________________________
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_______________________________________________________
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Please return form to:
The Beyond
Batten Disease Foundation PO
Box 200998, Austin, TX 78720
By Fax: 512-835-4687
By E-mail: Jamey@brakespecialists.com
Online:
www.beyondbatten.org
Questions?
512-426-1346
The Beyond
Batten Disease Foundation, which is a registered 501(c)(3) nonprofit
organization. Contributions are
deductible to the extent allowed by law.
Tax ID# 26-3223661.