I hope this letter finds everyone doing well. Dylan is holding his own and
fighting the good fight! He is enjoying being a big brother to Brady, they
seem to calm each other when they are together.
We are seeking volunteers for the Uwchlan Township Community Day tomorrow,
Saturday, July 9th at the LYA ball fields. We are going to display
brochures to educate the public on Tay-Sachs along with selling some of
Dylan's products like bracelets, candles, cookbooks. The event begins at
4pm. Please contact Maureen at (610) 524-0537 or email firstname.lastname@example.org
for details on how to volunteer your time.
There is also a fundraiser in the Huntingdon area tomorrow (above Penn
State) for those who are interested in participating in a Poker Run,
Motorcycle Ride, and Benefit Dance for a four year old little girl named
Chelsee who also suffers from TSD. For further info, visit Dylan's website.
The boys enjoyed the 4th of July weekend and attended Good Neighbor Day in
Downingtown. Dylan struggles with the humidity so we try to keep him
indoors in the A/C for the most part otherwise he needs to supplement with
oxygen. He is 35 pounds and 37 1/2 inches long at almost 44 months old.
His baby brother is now 11 pounds and 22 1/2 inches long! It is quite a
challenge taking care of both boys because Brady demands all of our
attention, he is a tad bit spoiled to say the least. We usually have help
with family to care for them both as Dylan's needs are constant and it is
very difficult with one adult. We will be adding pictures to the web
shortly so you can keep up with them.
We would like to give a BIG thank you to Vince Penderghest for restructuring
Dylan's website, he spent many long hours and dedication to perfect this for
us. It is still a work in progress but will be complete soon. Keep
checking back at www.djsfoundation.org for cool pictures and info.
The next golf outing committee meeting is to be held this Wednesday, July 13
at 7 pm. If you are interested in participating, please contact Bill at
email@example.com. Hold the date for Monday, September 12th, that
is our 2nd annual golf outing at Honey Brook Golf Club. Brochures will be
going out soon for participants and corporate sponsors.
We are heading down to New Jersey this weekend for a visit with Auntie Jen
and Uncle Brian to check out their new house! If the weather cooperates,
Brady will get to go to the beach for the first time! Dylan loves the sand
and the ocean breeze but the water is way too cold for him to enjoy! He is
a great sunbather! It is great stimulation for him with the sound of
seagulls, ocean waves, salty air, sand between his toes and kids laughing
while building sandcastles. Daddy usually builds him his own sand chair so
he is cozy on the beach.
Next week we are heading to Boston for a visit with family and friends. We
are stopping in New Jersey on the way to give a presentation for corporate
development at Amicus (the company of NTSAD President John Crowley) on the
effects of Tay-Sachs and the Invitro process.
I think that's all for now! We'll keep you posted! Enjoy the rest of your
summer and have a great weekend!
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