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My greatest passion is helping people with Ehlers-Danlos Syndrome (EDS).
EDS is group of six genetic connective tissue disorders. I have the
hypermobility type of EDS which makes my joints loose and unstable. I
frequently experience joint subluxations and dislocations which lead to
osteoarthritis and chronic pain.
Another type of EDS, the Vascular type, causes the internal tissues to be
fragile and prone to rupture. In 1994, I met an amazing young woman with
Vascular EDS. She and I became friends and she was the maid of honor at my
wedding in 1999. Just weeks after the wedding, she suffered her third
bowel perforation. After a 10-month hospitalization, she passed away at
the age of 26.
Because of my own experiences with Ehlers-Danlos Syndrome and those of my
friend, in April 2000 I helped form EDS Today,
the newsletter for, by, and about people with Ehlers-Danlos Syndrome.
Together with other people with EDS, we publish a 40+ page newsletter on
Ehlers-Danlos Syndrome every April and October.
Return to Volunteer Activities
Refugee Women's Alliance
I started volunteering with Refugee Women's
Alliance (ReWA) in 2001. I had been invited by a friend to attend the
1999 annual fundraising dinner auction. My husband and I had such a great
time, we returned in 2000. In 2001, I joined the dinner auction planning
committee and have served on the committee every year since. In early
2003, I joined the board of directors.
Return to Volunteer Activities
DAHRT - Disabled Americans Have Rights Too
DAHRT, Disabled Americans Have Rights Too
was my first volunteer activity. I served as Secretary for several years.
Due to other time commitments, I had to scale back my involvement over the past
few years, but
am now serving on the board of directors.
Return to Volunteer Activities
Washington Ehlers-Danlos Support Group
For the past 10 years, there has been an off-and-on Ehlers-Danlos Support
Group. When there have been interested people in the area, we have held
support group meetings in the greater Seattle metro area.
The current group has been active since February 2001 and meets every four
months on the first Saturday of February, May, August, and November. The
group also has an email
list so members can stay informed of meetings, events, and other important
EDS news.
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Kerry and I are graduates of the FEMA CERT training program. CERT
stands for Community Emergency Response Teams. The CERT program educates
people about disaster preparedness and trains volunteers in the community to
provide aid in the event of a disaster. The emphasis is on providing
immediate response to your own community - your friends and neighbors - at a
time when regular emergency services may not be able to reach your area.
Return to Volunteer Activities
Other Activities
Prior to serving with EDS Today, I was
the President of the Seattle Area Branch of the Ehlers-Danlos National
Foundation. The Branch has since closed as members elected to become an
independent support group instead.
My husband and I have also been involved with local politics and volunteered
in four different local campaigns. In 2001, we supported Linda Kochmar for
Federal Way City Council. In 2002, we supported Jim Ferrell for State
House and Tony Moore for State Senate. Sadly, both gentlemen lost their
campaigns that year. In 2003, we supported Jim Ferrell again - this time
for Federal Way City Council. We're proud to say that Jim won the election
and will be sworn in on January 6, 2004. Now, watch for us on the street
corner in 2004 supporting Tony Moore in his campaign for 30th District State
House.
Although I don't have time to volunteer with any more organizations, I do
support the following charities and encourage you to check them out as well.
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Contact
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P.O. Box 88814
Seattle, WA 98138-2814
Tel: 253-835-1735
Email:
Barbara
Uggen-Davis
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