One of our home town friends, Deborah Kret Shaw and her loving family, has recently suffered a devastating loss, her son Ryan passed away this past July at the tender age of 22. I knew Ryan through my sons and their band, all of them shared a love of music and it brought them together. We were deeply saddened by the loss of Ryan,
and brought to light his story and his fight against the very deadly cancer known as Sarcoma. Not many people talk about Sarcoma, and today we would like to bring awareness to this very deadly cancer that predominately strikes the very young. When Ryan passed we lost a wonderful and talented soul who spent many day and nights trying to bring awareness to Sarcoma. We would like to honor Ryan and all the others who have lost their lives while still in their very bloom of youth.
So I would like to introduce Nick & friends a relatively new foundation that was born with the idea to bring awareness to those afflicted with sarcoma cancer. Often referred to as the “forgotten cancer”, sarcoma commonly is found in children and make up 20% of all childhood cancer cases. It is a very rare , very aggressive cancer that is resistant to traditional treatments.Because of this, the survival rate is frightenly low.
Due to the rarity of this cancer, victims & their families are very isolated. In terms of funding, sarcoma is ignored, receiving less than 1% of all research dollars. Nick and friends goal is to raise awareness and funds to help sarcoma families & research. Nick & friends operates with monies generated from donations and various fundraisers and currently helps with funding for continuing sarcoma research at childrens hospital at CHLA . The foundation has also granted wishes for sarcoma children and provided travel & lodging funds for sarcoma families. N&F’s biggest challenge has been to bring awareness to sarcoma and let the public know more about this disease that attacks more children each day.
For the second year, Nick and Friends is sponsoring Angel Trees to help children with sarcoma cancer and those children in sarcoma families. We are gathering gift cards for these children to help make Christmas a little brighter during some otherwise gloomy times. If you would like to help or learn more about Nick and Friends, visit us on facebook, https://www.facebook.com/fightsarcoma or visit our website http://fightsarcoma.org/ you can help the families and children who are fighting this deadly disease by donating to Nick and Friends and take part in their Angel Tree fund raiser. It is my sincere hope that the Angel Tree fund raiser will bring in enough funds this year to make a difference.
If you would like to sponsor a tree next year or donate money, or help provide a vacation for their make a wish come true then please contact them today firstname.lastname@example.org every donation counts, it doesn’t matter what the amount is. If you can donate a two night stay, or more it could be the very thing that a child and their family could develop lasting memories away from hospitals or doctors. This gift could be the last memory a family has with their child, and the last peaceful, happy memory they might share with their loved one.
Sarcomas are quite rare with only 15,000 new cases per year in the United States. Sarcomas therefore represent about one percent of the 1.5 million new cancer diagnoses in that country each year, and are well below the US’s orphan disease threshold of 200,000 cases per year. Gastrointestinal stromal tumor (GIST) is the most common form of sarcoma, with approximately 3,000-3,500 cases per year in the United States.
Sarcomas affect people of all ages. Approximately 50% of bone sarcomas and 20% of soft tissue sarcomas are diagnosed in people under the age of 35. Some sarcomas, such as leiomyosarcoma, chondrosarcoma, and gastrointestinal stromal tumor (GIST), are more common in adults than in children. Most high-grade bone sarcomas, including Ewing’s sarcoma and osteosarcoma, are much more common in children and young adults.
Low grade sarcomas are usually treated surgically, although sometimes radiation therapy orchemotherapy are used. Intermediate and high grade sarcomas are more frequently treated with a combination of surgery, chemotherapy and/or radiation therapy. Since higher grade tumors are more likely to undergo metastasis (invasion and spread to locoregional and distant sites), they are treated more aggressively. The recognition that many sarcomas are sensitive to chemotherapy has dramatically improved the survival of patients. For example, in the era before chemotherapy, long term survival for patients with localized osteosarcoma was only approximately 20%, but now has risen to 60-70%.
Please take the time during this season of celebration to think of those who have lost their loved ones and give the gift of life, the gift of love, the gift that keeps giving with every memory that is created. We can all help make life easier for the families and the loved ones who may suffer a loss, or to those who may have already suffered a loss.