Fundraising
Tips & Events
Information about the National (international) Batten Disease Awareness
Day, the Strategic Fundraising Plan, progress toward goals, upcoming
events, etc.
Events
Upcoming:
Denver, Colorado
20th Annual Batten
Disease Support and Research Association International Conference
BDSRA Conference 2008: “Climbing Mountains Together”
July 17 – 20, 2008 Renaissance Denver Hotel
Kona,
Hawaii
Running the Hawaii Ironman Competition
for Batten Disease
Adam Weaver of Ft.
Collins, CO (in memory
of brothers Tyson and Timothy—JNCL) is doing something that most
athletes only dream of—competing in Ironman 2008. Ironman is the
ultimate triathlon competition in which only the best 1,700 athletes
from around the world compete against one another and themselves in
a swimming, biking, and running competition that is unlike any other.
On October 11, 2008 in Kona, Hawaii, Adam will complete a 2.4 mile swim
in the ocean, 112 mile bike ride, and 26.2 mile run. Adam is competing
to raise awareness for Batten Disease and his two brothers, Tyson and
Timothy, who died from the disease. Family and friends will attend the
event to support Adam and will be wearing red t-shirts with Batten Disease
information on them. We wish the best of luck to Adam and the Weaver
family! For more information about Ironman, please visit http://ironman.com/news.
Recent:
New York
-Batten Disease Awareness Day - Jump for a Cure
On Saturday June 7, 2008 at The Blue Sky Ranch in Gardiner NY my mother
sky dived for the first time. Mom is 73 years old and has been bugging
me for years about what she can do to raise awareness of Batten disease.
So on the first "Batten Disease Awareness Day, mom jumped out of
a plane in honor of her grandson Ryan.
www.youtube.com/watch?v=gr0Jhs18HMc
Please
use the link above and view the best video anyone ever sent you. Help
our cause and forward this link to your friends and hopefully this can
go around the world. Ask yourself this question....would you jump out
of a plane at 9,000 feet? If you said yes let me know and you can join
us next year and help make the event even bigger. So am I considering
jumping next year? They tell me I'm too heavy. Since I have a built-in
excuse, I'll coordinate on the ground!
Eric Faret
North
Carolina
- Below
is the link to You Tube to see the UNC TV story on the Triangle Special
Hockey Association. It is an awesome piece! Eric is highlighted.
The
Triangle Special Hockey Program is a nonprofit, 501c3 tax deductible
charity. Their website is www.trianglespecialhockey.org
and donations can be made and are urgently needed.
http://www.youtube.com/watch?v=u9Bq89VHwG4
Danielle
Lowden
- June 7th - ourboys
5K Run & Festival . . . more
info, Registration
for 5K, Sponsorship
Levels, Festival
Flyer
Texas
- Dallas
@ Flagpole Hill - Saturday May 10th, 2008 - Hope for Batten Cure 5 Mile
Run / 2 Mile Walk / 1K Fun Run - Registration at 8 am, race at 9 am
. . . more
info
Misc.
Big news this from Dave's
Homeroast. My Etsy store, allowing me to sell fresh roasted coffee beans
online, now has an easy-to-remember web address: www.daveshomeroast.com.
Everything
else is the same: You get all of the quality of my fresh roasted coffee
beans, all of the convenience of online shopping, all of the satisfaction
of contributing money to the fight against Batten disease, and none
of the aggravation of interacting with me. It's a win-win-win-win.
Tips
BDSRA
Fund Raising Guide
Step
by Step Guide to Successful Fund Raising by Amy Kirk for family,
friends, and supporters of Batten Disease Support and Research..
Batten
Disease Awareness Day Sample Letters
Here
are 2 letters you may use as samples / templates if you want to tailor
them to your needs for Batten Disease Awareness Day.
One letter was written by a member of (Peg Dicapua's daughter) Melissa's
Girl Scout troop and they have collected about 100 + addresses of their
friends and relatives to send the letters to. I think they did a great
job and it will tug at some heartstrings.
Girl Scouts are unable to directly solicit funds for any organization
but G.S.
letter
template 1
This letter is one that Peg will be sending to anyone
who contributed to her fundraisers in the past. She did not ask for
donations in either letter.
letter
template 2
Batten
Disease Awareness Day Logos:
Click
on the thumbnail image below for full size image, then right click on
large image to Save picture as file to your computer..
"No
Show" Concepts:
These same ideas could be modified for St. Patricks Day, "March
Madness" (College Basketball Championship), Cinco de Mayo gatherings,
etc. that are popular in your region . . .
