Oliver's memorial (cancer) fund
As some of you may be aware, I was diagnosed with an INI1-deficient sinonasal basaloid carcinoma on January 14, 2015. In laymans terms – cancer. Now what makes my case so unique is that:
A) sinonasal cancers are rare
B) INI1 deficiencies are rare
So you might say I’m pretty special
I’ll include a longer version later but in short since this diagnosis I’ve had four major surgeries, three rounds of chemotherapy and approximately forty-four rounds of radiation. The risks increase with each operation but due to the very nature of this disease, few options are available.
After much research I’ve been fortunate enough to be presented with an unbelievable opportunity that has the chance to inhibit these cancerous cells. In my particular cancer I’m missing one gene causing it’s counterpart to grow uncontrollably.
This trial I’m asking you to help fund allows me to access a drug that is designed to suppress that gene growing out of control and promote normal cell growth and reverse the mutated cell growth that exists in my body.
This study is being conducted in the US only at this time. To participate in this trial the facility requires a deposit prior to beginning to cover anticipated costs. This will cover all the assessments and testing for one year as well as any required hospital visits.
Now. How much is this deposit? The grand total is approximately $134,000 USD. Quite a steep sum, huh?
At first thought you may be asking what makes it worth so much. Well in their phase one trial there was one patient with a similar INI1 deficiency who achieved complete remission and has remained this way for 65 weeks ongoing. Additionally, there were six others with similar disease who achieved partial remission and are receiving ongoing treatment.
Where no treatment previously existed for this type of cancer, there now is hope.
I’m not expecting to hit the whole amount stated above but anything helps. This is a terrible disease that affects everyone at some point in their lives and hopefully the results of this trial can be used to provide those going through a similar battle a solid treatment plan.
Also – to my amazing friends, family and medical team that has stood by me through everything so far. Thank you. I really wouldn’t be where I am today without you.
Thank you for taking the time and visitng my page.
Much love,
Olivier
Sources:
http://www.epizyme.com/wp-content/uploads/2015/06/ICML-Slides-Presented-062015.pdf
http://www.businesswire.com/news/home/20150926005029/en/Epizyme-Announces-Updated-Tazemetostat-Phase-1-Data
