You asked what you can do - well this is it.
For the past several months everyone has asked, "If there’s anything that we can do, please let us know." Well, I have finally found something that EVERYONE can do that will make a difference. All it will take is a little of your time.
We beg each of you - please take the time and do this for us, and for Shelby.
On the day that Shelby’s doctor told her that she would die, Shelby’s only request was that they continue to look for a cure for HER cancer. The problem is Shelby’s cancer, Sarcoma, is an extremely rare type of cancer. So in the grand scheme of cancer research, very little has been done to find a treatment, let alone a cure. Of all of the funds donated or allocated by the government a tiny portion is given for Sarcoma research and each year that amount gets smaller. One of the biggest problems with Sarcoma is that most doctors will go their entire careers without ever seeing one, and if they do, it will most likely be misdiagnosed. In a lot of these cases the time lost will cost the patient their life. Each year 11,000 people, mostly children, will be diagnosed with Sarcoma. Of that amount an unbelievable HALF of those people will NOT SURVIVE. That is 5,500 Shelbys and 5,500 families that will go through the unbelievable pain and anguish that we have. This is not acceptable! In a lot of cases, like Shelby’s, there will be NO treatments that will have an affect on this cancer. They will never have a chance, unlike other cancers that are treatable and curable.
So after many sleepless nights of research trying to find a way to make a difference, a way to honor Shelby’s request, I discovered a foundation called The Sarcoma Foundation of America. It was founded by Sarcoma patients and their families who know the true horror of this disease. Their mission is to raise awareness of Sarcomas, educate doctors in diagnosis, increase research, find new and better treatments and last but most important-find a cure. One of the most important things that they do is provide research grant specifically for Sarcoma research. I have spoken with executive director, Jody Cummings (a Sarcoma survivor), and we are getting ready to go through the process of setting up the Shelby Richter Sarcoma Research Grant. You can find out more by going to their website at www.curesarcoma.org .
So we come to, what YOU can do. After speaking with Jody, he told me that the most significant thing that people can do is write to members of the Senate and House of Representatives that are in charge of health issues and allocating funds for research. To raise their awareness of this disease and make a difference. On their website they have a Public Advocacy page;
http://www.curesarcoma.org/publicPolicy.htm
They have made it easy by providing the list of members to write to, links to their e-mails and a sample letter that you can download. You just add in your information and a brief description of Shelby’s story and how you have been touched. I, of course, went above and beyond and e-mailed EVERY Senator and Representative in the House in the entire country. But of course we are only asking that you write to the ones that are listed as it WILL make a difference. In doing this we will be honoring Shelby’s request to continue to find a cure for her cancer so that no other little girls will die from it. And from me, to spare another mother of having to bury her beautiful, vibrant, intelligent daughter too soon and enduring this heartache.
Let them know about our Shelby, "Absecon’s Angel", let this town be heard!! Charlene & Rodney
Email us and let us know you did it !!!
RodneyR@weloveshelby.com