Dani’s Foundation Farewell

April 2014

Dear Family, Friends, and Supporters:

It is with heartfelt gratitude that I write this letter today.  It has been 15 years since Dani’s passing and in that time we have accomplished a multitude of things toward affecting pediatric cancers. I so appreciate your time, donations, suggestions, thoughts and prayers over the past 15 years.

Dani’s Foundation was formed in Dani’s memory and more importantly to carry out her wishes of continuing to overcome the effects of cancer and treatment on patients and their families. Dani had a passion for many things in life and she would say to me, “Mom, I’m not dying of cancer, I’m living with it”. And she did live; she danced, went to school, worked, cooked, painted, sewed, designed, drove, hung out with friends and thoroughly enjoyed life.  At the same time, she also dealt with all that was thrown at her during her cancer treatment.  Throughout it all, she never gave up and in the end she was so surprised that she did not beat her cancer because she really believed she would.

That is when I picked up the torch to carry on her battle and continue to overcome this disease we had all come to know so well.

Over the years, Dani’ Foundation has become a cornerstone for patients and families going through what we did – the diagnosis and treatment of Ewing’s sarcoma and the other forms of pediatric sarcoma.

The shock of a cancer diagnosis – of any kind – is hard to describe when it happens to your child.  It rocks your world and turns it upside down.

Once cancer happened to my daughter and family, my goals became clear; 1) to find a cure, 2) to find a better treatment protocol without the devastating side effects, and 3) to develop better early diagnostic tools.  I am so very proud of all that has taken place over the past 15 years; thanks to our involvement with so many patients, family members and caregivers.  I know that we have helped others while we worked toward accomplishing those goals that were set from the very beginning of Dani’s Foundation.

Our many successes occurred thanks to the support of others and for that I thank you all!  I would also like to express my personal thanks to Martha Simmons, our Executive Director for the past five years.  Thanks to Martha’s leadership, she organized us all to bring our goals to fruition.  Because of Martha, Dani’s Foundation has become that place of comfort for others.  Through her efforts in the development of our website and social media outlets, thousands have learned about Ewing’s sarcoma and the other forms of pediatric sarcomas.

Dani’s Foundation was also instrumental in taking the lead of providing financial assistance to those patients and family members who were struggling due to their cancer diagnosis and treatment.  Over the past 4 years, Dani’s Foundation has provided over 56 patient assistance grants to those in desperate need of support.

Dani’s Foundation has been successful in coordinating efforts with patients, family members and volunteers who personally walked our pediatric sarcoma educational brochures into schools and physician offices in 27 states and 7 countries.  We thank each of you for your help in spreading the word on the symptoms of pediatric sarcoma.

From the outset, Dani’s Foundation has been committed to providing funding for seed research grants to those scientific investigators who are committed to finding better treatment protocols for ALL pediatric sarcoma patients.  Since its inception, Dani’s Foundation has been successful in providing close to $1 million in research funding to those scientists who are committed to the pediatric sarcoma community.

Thanks to our commitment and efforts to form alliances with other like organizations and supporters from around the globe; we can now report that there is now a viable treatment option for Ewing’s patients that is currently in clinical trials and in the very near future we hope that this same treatment protocol will be made available to those patients diagnosed with Osteosarcoma.

And so, with the news of these viable treatment options on the horizon, the time has come to bring Dani’s Foundation to completion.  We will be closing our doors on April 30, 2014 and passing our torch to those other individuals and organizations who are working toward the end to pediatric sarcomas.

This is truly a bittersweet time for me.  Although I am saddened to see it all come to an end, I take great pride in all that has been accomplished over the past 15 years; in memory of Dani and the countless other children and young adults who battled pediatric sarcoma.  As a mother, I can tell you that Dani will always be a living spirit to me and my memories of her will remain strong all the days of my life.  The same is true for others of you who have also lost their children to one of these horrid diseases.  We are kindred spirits joined together forever in memory of our children.

I will be forever grateful to all of you for all that you have done and given to Dani’s Foundation and the many projects on behalf of the pediatric sarcoma community which we have championed together.

We are looking forward to the future, as we pass our torch on to others who are committed to taking over for us in the areas of patient assistance, education and research.  I will be joining with them – only in a more private way now – continuing to honor Dani’s life and working to make cancer something that we live with rather than what we die from.

Thank you again for all you continue to do to make the world a better place. Your friendship and the support that you have bestowed upon all of us will resonate for many years to come!

From my heart to yours,

 

 

Michele Ashby
Dani’s Mom