|
Our Board
Click on the pictures to find out a little more about
that person. This link is only active for those who have submitted their bios.
| Treasurer |
|
| Jane Moulds |
| Vice President |
|
| Jan Bariski |
| Chaplin & Board Member |
|
| George Peters |
Joni Fixel, MI, President, Legal Advisory Officer, Membership Chair,
joni@nlmsf.orgSharlene
Zagozewski, Pa, Secretary, sharlene@nlmsf.org.Dr. Lucy Rorke-Adams, NJ, Medical Advisory Officer, drlucy@nlmsf.org
|
 |
|
FUNDRAISERS:
The National Leiomyosarcoma Foundation started
in 2001 with just $500.00. To date, through the hard work, dedication, and determination of all our volunteer members
and families, we have raised over $700,000 to further LMS research & awareness. Throughout the year, there are a variety of
fundraisers held throughout the country to support awareness and to raise funds to support research for LMS. These events
generate tens of thousands of dollars each year and have been hosted by children in Sunday School Class all the way up to
90 year old individuals....Events range from simple bake sales, community garage sales and raffles, to full scale golf tournaments,
5-K walk/runs, to "gaming" events and every concievable idea in between. No idea is too small or too BIG...EVERY
dollar is important and helps us make a differance.
ANNUAL FOUNDATION EVENTS:
The National Leiomyosarcoma Foundation, Inc, host
two annual gatherings for LMS survivors, families, and caregivers, as well as families that have lost someone to LMS, HUGFEST
AND BRIDGEFEST
HUGFEST
In April each year we host "Hugfest" in the Philadelphia,
PA area. This event began as a luncheon, organized by Karen Gibson in 2001 at The Holiday Inn located in Lancaster,
PA. It continued at this location through 2003. In April of 2004 the event had grown in both numbers and size.
It was because of the generosity and dedication of one of our dearest and most beloved members, the late Mr. Boyce Adams,
that in 2004 the event was moved to the Philadelphia, PA area.
Mr. Adams was a large supporter of the Joan Karnell Cancer Center at The Pennsylvania
Hospital where his late wife Betty had been treated for her leiomyosarcoma. Mr. Adams arranged and funded for all our
attendees to tour the hospital facilities. In addition, we went to The Coriell Institute where blood draws from LMS patients
were taken for storage to be used for research in the future. A wonderful luncheon was hosted by Mr. Adams before
our return bus trip to the hotel. During the luncheon, presentations were made by various researchers that are currently
being funded by the NLMSF to do research on LMS. They provided us with a summary of their findings over the previous year
and what lies ahead in the next year as far as their research studies are concerned.
continued in
next column
|
 |
|
|
|
|
| President |
|
| Joni Fixel |
| Secretary |
|
| Sharlene Zagozewski |
| Scientific Advisor |
|
| Dr Lucy 2008 |
|
| Jen Smith |
|
|
|
Our Founders
- Ed Hoag (The Late Nancy
Hoag)
- Harry Froling
- Diana Froling
- Kenneth Gibson
- Karen Gibson
- Joe Fischer (The Late Donna Fischer)
With all the activities, it became obvious that we could
not accomplish everything in a single day event. Therefore, our "luncheon" grew into a wonderful the 3 day event.
HUGFEST is held each April in Philadelphia and attracts
patients, caregivers, family members and loved ones from all over the country. It kicks off with an informal "Meet
& Greet" gathering and registration on Thursday evening at The Marriott Hotel located in Mt. Laurel, NJ.
It is a great time for all of us to catch up, meet new people and reflect on the last year. Everyone is welcomed with a smile
and greeted with hope.
On Friday morning we travel to
downtown Philadelphia, PA for medical research updates, presenters, tours, or free time sight seeing. On Friday evening,
there is a group activity planned. In 2006 and 2007, it was a bowling party and buffett dinner generously organized
by a NLMSF member. In 2008, we plan on an evening dinner at our hotel. Whatever the activity, it is sure to be a
good time.
Saturday morning is the highlight of the
weekend when we host a beautiful breakfast buffet at the hotel and have our researchers from Stanford University, Pennsylvania
Hospital, & Bassett Hospital present new breakthroughs in research from the previous year. By Sunday morning we
are all ready to go home to get some rest.....We laugh, cry, play, and learn an enormous amount in the three short days
of "hugfest" and form lifelong friendships......How wonderful is that??!!
BRIDGEFEST
On
Labor Day each September we host "Bridgefest" at the Mighty Mac Bridge in Mackinaw City, Michigan.... Everyone tries
to arrive by Friday evening for a meet and greet and dinner at a local restaurant. On Saturday we get together for sight
seeing and fun. In 2007, ferries transport us from Mackinaw City to Mackinaw Island for a fun horse drawn carriage ride
along the quaint cobblestone streets along the lake and through the woods. Mackinaw Island is an amazing place that
is great for people of all ages. There are wonderful restaurants and amazing homeade fudge. The only mode of transportation
on the island is by horse-drawn carriages, bikes or walking.
On Sunday we have planned activities during the day and in the evening we all get together for
a Foundation hosted dinner for all of the participants. EARLY Monday morning, Labor Day, we head out to our National
Leiomyosarcoma Foundation Booth, which is at the end of the bridge walk. Some of us walk the 5 mile walk across the
bridge in honor of all of our LMS friends....... There are only 3 nonprofit organizations that are allowed to have
booths at the bridgewalk and thanks to our board member, Joni Fixel, 2008 will be our 4th year!!!! This is a wonderful
time and opportunity for us to spend time together but more importantly, we hand out and share a lot of information about
LMS to the general public. After the walk , we all enjoy an outdoor, BBQ picnic. What a weekend!
|
|
