Something Extra

Doer Profile

ADAM SACHS

City: Brookville, Md.
Kudos: Climbing For A Cause

Both Sachs and his wife, the former
Adam Sachs will go to any lengths to
Stacey Olson, grew up in West Bloom-
help his son, Justin, including climbing
field and attended the University of
Mt. Kilimanjaro, all 19,340 feet of it!
Justin, now 11, was born with Familial Michigan. Justin has two brothers,
Dysautonomia (FD) — a rare, degener- Jonah, 3, and Aidan, I. Both are carri-
ative genetic disease which occurs among ers of FD but do not have the disease.
Jewish people of EastEuropean ancestry.
What is Familial Dysautonomia?
Justin has undergone more than a
"FD is a progressive disease that
dozen hospitalizations, several surgeries
and many bouts of life-threatening pneu- involves the autonomic and sensory
nervous systems, affecting functions
monia. He receives nourishment prima-,
such as body temperature, blood pres-
rily through a feeding tube.
sure, swallowing and sensitivity to
To raise money for research and
pain. Kids like Justin have frequent
drugs, and to increase public awareness
lung infections, severe retching and
about FD, Sachs and his sister, Pamela
progressive curvature of the spine,
Clack of San Diego, will travel to
which usually requires major surgery.
Tanzania, Africa, this month to climb
FD affects about one in 30 Jews of
the highest freestanding mountain in the
Ashkenazic descent, like Tay-Sachs.
world. This will be the first mountain
Both parents have to be carriers, but
climbing experience for both of them.
there is still a one-in-four chance of
Sachs, an executive in the biotech
having a child with the disease. Only
industry is requesting pledges in support
about 300 people in the world have it,
of the climb, to be donated to the
so research is scarce. Genetic testing is
Dysautonomia Foundation, which has
important because there are no warn-
research facilities in New York and Israel.

ing signs or
symptoms
for carri-
ers."

Justin, 11, with dad, Adam, who will climb Mt. Kilimanjaro
Why
to raise funds and awareness for Familial Dysautonomia.
undertake this ?
"I was inspired
by Justin's courage. Despite all of his
How have you prepared for the climb?
health problems, Justin is one of the
"Basically, we've been working out
most loving children you could ever
like crazy, doing a lot of biking,
meet. His smile lights up the room,
stretching and cardiovascular training.
and his giggle has become famous
We have a lot of reasons to be hopeful,
throughout his school. Justin climbs
and the mountain is symbolic of that
his own mountain every day; I'm only
hope."
doing it this once."

—

What do you hope to accomplish?
"Our financial goal is $100,000, of
which we've already received $28,000
in pledges. Besides raising money, we
want to get the word out about FD, so
that all Jewish people of Ashkenazic
descent will get tested before getting
married and having children."

Ronelle Grier, special writer

To make a contribution in Justin's
honor or to learn more about
Familial Dysautonomia, visit
www.familialdysautonomia.org/
Sachs/climb-for-FD.htm, or call
the Dysautonomia Foundation ar
(212) 279-1066.

REPORT A DOER...:Know a Doer — someone of any age doing interesting, meaningful things in their life outside of their job? Share suggestions with Keri Guten Cohen, story devel-
opment editor, at (248) 351-5144 or e-mail: kcohen@thejewishnews.com

Shabbat
Unplugge

•
•
•
•
•

•
w.
•

•

•
•

•
•

•

• •
•
•
•

•
a

•

iv, • •

•

• •

•

r D

Under the Stars!

A joyful, prayerful,

song-filled, rocking, jumping,
moving, grooving, spiritually-soothing,
funky, folksy, fun
Shabbat worship experience

[for everyone/

August 121 2005 • 7:30 PM

For snore infix

websita at:

Call Templa Israel. at 248-661-5700L Or check out our

s r
habbatunptuggedcom

The Rosanne and Bennett Sermon Family Yung adult

Fund of Temple tweet; Co-sponsored by the

DIOSSINfri8117511101M

'TN

8/11

2005

12

5725 Walnut Lake Road, West Bloomfield, MI

EXPERIENCE SHABBAT LIKE NEVER BEIPOR -E

1007700

