ISO some light to shine upon our initiative.
Searching for light to shine upon www.angiosarcomaawareness.org
I’m just your average single mother of two whose life has been complicated by four cancer diagnoses. I battled your average but aggressive breast cancer, two melanomas, and a rare cancer known as AS (Angiosarcoma). Rare diseases exist with most being life threatening or terminal. No significant focus on research geared to the development for cure or prevention is being conducted for the fact that rare disease does not affect enough of the population.
A few women with this rare cancer, AngioSarcoma (AS) found each other online in search of support —in search of trying to find a living AS survivor who could offer some hope that perhaps they will be lucky enough to survive for at least another year. After communicating online and by phone, these women decided they wanted to meet in person for a nice social evening to include the kind of support you can only get from someone who has, or is, walking in your shoes. The expectations of that evening were not only met, but shifted into something unexpected and so much bigger. These women decided that if they wanted to live and to help others, then they would have to take matters into their own hands and create the way. In less than 4 months, these women have secured a world-renown laboratory, at Memorial Sloan- Kettering, obtained research scientists, and have to date raised almost 200k— which will fund the first year of the project. In addition, this patient-driven initiative has created a source of inspiration locally within the few and scattered communities in which these women reside. The strength, hope, determination and fighting spirit needed to battle a deadly disease is all-consuming. To take on such a project in addition, and with no experience, in an all out effort to create a movement toward awareness, is perhaps history in the making.
While our main goals may be apparent, we also aspire to inspire others to recognize that potential to achieve what they want or need is attainable and available for all who seek.
In regards to our research project and promising results for our type-specific disease, an even more compelling possibility exists and is listed in our broad scale implications:
By unlocking the processes that drive angiosarcoma, we may be able to apply that knowledge to targeting the aberrant process of angiogenesis associated with tumor initiation in other cancers. The development of therapies that inhibit angiosarcoma may then be of benefit in fighting other solid tumors (common cancers).
Those familiar words we survivors yearn to hear are remission and NED (NO Evidence of Disease) but we all strive and long to hear the word CURE!
The bottom line is that while on the surface our mission may seem insignificant to the vast population, beneath the surface is potential for positive impact on millions— a compelling reason of which to shine a light upon.
