Hugfest 2013 - Save the Date!
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Join Us for Hugfest 2013!
Ann Arbor, MI April 18, 19 and 20th! |
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Hugfest is now just a week away! The National Leiomyosarcoma Foundation is proud to announce we have added a special guest! Charlie Lustman! Singer, Songwriter, Producer. Charlie is a survivor of a rare type of osteosarcoma cancer of the jawbone. He travels all over the world singing his Musical Message of HOPE Campaign for cancer survivors. He has recorded several albums and is wrote and sang the theme song to The Mike and Maty Show. You can see more about Charlie on his website at: http://www.mademenuclear.com/ or Facebook at: facebook.com/MusicalHOPEcampaign
We are very excited to have Charlie with us this year. He will be performing right after the lunch break promptly at 3:00 p.m. in the Park Place Ballroom on Friday 19th. Please try to be back by 2:45 in order to get everyone seated. DON'T MISS HIM!
You still have time to register for dinner and hotel ASAP. Contact Jane Moulds for Hotel reservations at jane@nlmsf.org and Lori Penton-Shields at lori@nlmsf.org for dinner reservations.
Dinner: Members: No cost
Non-Members: 22.95
Hotel: Members: 42.00 per night
Non-Members: 84.00 per night
Keynote Speakers
Dr. Scott Michael Schuetze, MD, University of Michigan Sarcoma Center
Dr. Rashmi Chugh, MD, University of Michigan Sarcoma Center
LMS & Sarcoma Treatments & Therapies
Dr. Mitch Achee, MD, Diagnostic Radiologist, Diversified Radiology P.C., Colorado
Scans, What Do They Mean & How Are They Used
Robert T. Dauchy, BA, CMAR, RLATG, Chrono-NeuroEndocrine, Tulane University
Melatonin Research Studies in LMS & Sarcomas
Dr. Matt van de Rijn, MD, Stanford University Medical Center
New Diagnostic Markers & Therapeutic Targets in LMS & Sarcomas
Dr. Scott Michael Schuetze, MD, University of Michigan Sarcoma Center
Dr. Rashmi Chugh, MD, University of Michigan Sarcoma Center
LMS & Sarcoma Treatments & Therapies
Dr. Mitch Achee, MD, Diagnostic Radiologist, Diversified Radiology P.C., Colorado
Scans, What Do They Mean & How Are They Used
Robert T. Dauchy, BA, CMAR, RLATG, Chrono-NeuroEndocrine, Tulane University
Melatonin Research Studies in LMS & Sarcomas
Dr. Matt van de Rijn, MD, Stanford University Medical Center
New Diagnostic Markers & Therapeutic Targets in LMS & Sarcomas
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Closest Major Airport: Detroit Metro:
Detroit Metropolitan Wayne County
Airport 2500 World Gateway Pl, Wayne, MI 48242
(734) 247-7678)
Transportation:
Custom Transit (734) 971-5555
http:// www.customtransit.com/
Metro Car (800) 456-1701
http://www.metrocars.com/
Attractions Nearby:
Briarwood Mall,
U of M Art and Natural History Museums
Gerald Ford Library
Stonebridge Golf
Questions:
Contact: Lori Penton-Shields
Event Coordinator: (517) 862-6769
lori@nlmsf.org
Detroit Metropolitan Wayne County
Airport 2500 World Gateway Pl, Wayne, MI 48242
(734) 247-7678)
Transportation:
Custom Transit (734) 971-5555
http:// www.customtransit.com/
Metro Car (800) 456-1701
http://www.metrocars.com/
Attractions Nearby:
Briarwood Mall,
U of M Art and Natural History Museums
Gerald Ford Library
Stonebridge Golf
Questions:
Contact: Lori Penton-Shields
Event Coordinator: (517) 862-6769
lori@nlmsf.org
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Meet & Greet
Thursday, April 18th, 4:00-8:00 Speakers Friday, April, 19th, 9:00-12:00 Speakers 12:00-3:00 Lunch on your own, museums 3:00-5:00 Speakers Saturday, April 20th, 8:30-12:30 Speakers, More |
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History of HugFest
HugFest is an annual gather of LMS Families. The first even was organized by Karen Gibson as a way to bring the online LMS survivors 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 accommodate a blood draw at Coriell University. Blood was drawn form 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 was arranged and provided by our late board member Boyce Adams. They very next year, the main program of Hugfest 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 indescribable.
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 accommodate a blood draw at Coriell University. Blood was drawn form 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 was arranged and provided by our late board member Boyce Adams. They very next year, the main program of Hugfest 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 indescribable.
| Hugfest 2012 Presentation |
HugFest
In April each year we host "HugFest". 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 the Corielle 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.
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 3 day event.
HugFest is help each April and attracts patients, caregivers, family members and loved ones from all over the country. It kicks off with an informal "Meet & Greet" gather and registration on Thursday evening. 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 there is the choice of updates, tours, presenters, or time for sight-seeing. On Friday evening, there is a group activity planned. In 2006 and 2007, it was a bowling party and buffet 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 Standford 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.
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 the Corielle 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.
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 3 day event.
HugFest is help each April and attracts patients, caregivers, family members and loved ones from all over the country. It kicks off with an informal "Meet & Greet" gather and registration on Thursday evening. 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 there is the choice of updates, tours, presenters, or time for sight-seeing. On Friday evening, there is a group activity planned. In 2006 and 2007, it was a bowling party and buffet 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 Standford 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.
