HugFest

Hugfest 2009

We have all returned from Hugfest 2009, held in beautiful Clinton, NJ. We had a great mix of long time members and new members in attendance. On Thursday night, we had a private “meet and greet” that allowed everyone to chat and begin to get to know each other.

Friday morning began with a review of the research presented by Dr. Bob Dauchy of Dr. Blask’s team. The Melatonin research project show great promise and we look forward to hearing much more next year.

After the presentation, the Wellness Community held several break-out sessions for attendees that encompassed nutrition, stress reduction, care-giver needs and much, much more. On Friday evening we all came together for dinner and Donnalyn Giegerich gave an inspirational speech about her journey with LMS.

Saturday morning attendees got to hear about the research progress at Stanford University with Dr. Matt van de Rijn, Dr. Rob West presented the report. Afterward, Dr. John Martignetti reported on the progress made with LMS at Mt. Sinai, New York hospital. The NLMSF presented Dr. West with a research grant of $58,000.00 for the next year’s funding of the project. Overall, there are great things being done in these research projects funded either in part or wholly by the NLMSF. Even though it is a long process, we are closer to targeted treatments and cures through funding these projects.

Maureen Kehoe presented the NLMSF with a check for $15,000.00 from the 5k fundraiser in her son, Derek’s memory. The Board recognized all the contributions and fundraisers given in 2008 that make these research projects possible.

The new Board of Directors was introduced to the membership reflecting the membership votes. Our new directors are Amy Rovi and Vicki Marrin. You will find more information about the committee’s and offices held on the webpage “About Us” at www.nlmsf.org.

After a wonderful rendition by our LMS American Idol – Vicki Peters and a lighting of the candle in tribute to all the warriors that have gone before us, we ended another weekend of hugs, laughter, tears and education. Many stayed over another night to enjoy all that Clinton, NJ had to offer before traveling home.

A special thanks goes out to Maryann Croce and Patti Lloyd for putting together a wonderful Hugfest 2009. We hope you can all attend Hugfest 2010.

Hugs and prayers,

Joni M. Fixel

President, NLMSF

History of HugFest

HugFest is an annual gathering of LMS families. The first event was organized and hosted by Karen Gibson as a way to bring the online LMS Survors and Caregivers together to meet in person.

The first event was held in Lancaster, PA as a luncheon and meeting of LMS Families. There were many stories shared and visions of a way to keep this annual gathering going.

Inspired by the sixty five people that were present, Ed Hoag spoke of how he would like to see a foundation started to promote the Awareness of and raise funds for LMS Research.

Within a very short period of time several ideas and volunteers came forward, hence, the birth of The National Leiomyosarcoma Foundation, Inc and the continuation of our annual Hugfest gatherings.

In 2004 HugFest moved to Philadelphia to accomodate a blood draw at Coriell University. Blood was drawn from the LMS volunteers to be processed, and frozen for future research. We also had a tour of Pennsylvania Hospital and a wonderful luncheon at the hospital arranged and provided by our late board member Boyce Adams. The very next year the main program of Hugfest was moved to the Downtown Club, thanks again to Boyce Adams, due to increase in size. HugFest has steadily grown in size and knowledge each year. Speakers from our research projects attend each year to update us. This is a great opportunity to meet and talk to the Doctors in charge of the research. Imagine a room full of LMS patients, survivors, care givers, and families, only at HugFest. If it were not for HugFest and BridgeFest, we may never know another person with LMS. The support you find at HugFest is undescribable.