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Dear Family & Friends -
I've been meaning to write to you all about the month of May and
what it represents. Yes, May has it all going on with Mother's Day,
graduations, First Communions, final exams, soccer, Little League
and even allergies. And these days, just like every other month of
the year, it has also taken on the responsibility of being the
"national month of (you name it)." I'm willing to bet that not too
many of you are aware that May is National Artisan Gelato
Month, National Good Car Keeping Month, or Sweet Vidalia Onions
Month. Shame on you!
I used to laugh at all of these "national months of" until one
actually had real meaning for me - for us. The month May also
happens to be National Prader-Willi Awareness Month. I'll be honest,
at first I hated the fact that there needed to be a "national month"
for PWS. Clearly that meant it was something really bad, right? Um,
not so much when you refer back to the examples above.
The bottom line is that as a result of a Congressional resolution,
PWS is now nationally recognized in this manner. The goal? National
awareness and hopefully more funding for research.
If you received this email, it is because you are someone who plays
an important role in Alden's life. Some of you have a very direct
and personal role, while others may not even realize their impact.
You are the therapists and teacher's who help him daily, the doctors
who investigate the best way to address his specific needs, his
brother's teachers who encourage them
to talk about having a special needs sibling, the parents who
teach their own children about differences and acceptance.
You are the family and friends who
love and support our family through the extreme anxiety of the
unknown and the joys of everyday accomplishments.
During the last few weeks of May, please think about Alden - the
obstacles he has yet to face...and the many he has already met head
on with determination! Think about all of the children and adults
affected by PWS and all of the cases that still remain undiagnosed.
Think about them when you wake up and feel hungry in the morning.
Think about them when you check your watch around noon because your
stomach rumbles. Think about them feeling that way all day, every
day.
If you get the chance, tell someone else about Prader-Willi Syndrome
or even the fact that you know this amazing little man who just so
happens to have one particular funky set of chromosomes. You never
know where a small amount of awareness and knowledge can lead!
Thank you all for who you are, what you do and the impact you have
on one child and his family today, as well as the countless children
and families who stand to benefit from your awareness in the future.
xo
j, t, g, n & alden
PS
- if you want more information about PWS, just click
here to learn all about it...and then tell someone else. You
might just tell the person who will one day develop new treatments!
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