My daughter Esrin Hedman lost her battle to this "unforgiving disease called Systemic Mastocytosis Mast Cell Leukemia on September 3, 2009 at the age of 26. She was to turn 27 on September 8, 2009. The Hope Fund was miraciously established on October 3, 2009 in memory of Esrin to raise funds for catastrophic, life and death emergencies for members of TMS, and others with mast cell disorders. It is to assist patients and families in desperate financial need in the face of a critical health situation. TMS assisted our family to such personal levels.
Valerie Slee is the founder of the HOPE FUND. I know what a daunting task this was for her to start this fund and to get the approval. We are eternally grateful to Valerie and TMS.
The HOPE symbol was created by 6 people joined in circle forming hearts of hope as they clasp hands. The center of joining together with hope is a start representing achievement of the goal. In the case of Mastocytosis, that goal is a cure.
The HOPE FUND keeps the memory of Esrin alive. So much has changes in seven years, from this unknown rare disease to all the advancements that have come. There was no Facebook, especially dedicated to patients who have Mastocytosis at all levels. Such a great forum for support.
We shall never give up HOPE for a cure.