Promoting Awareness

With amyloidosis being such a rare but brutal disease, the fact that it is so misunderstood and diagnosis is often delayed beyond treatment means that promoting awareness is critical. Chris and I remain incredibly lucky that she read the news article about Jenifer Gershman in the newspaper. http://www.metrowestdailynews.com/archive/x1853598606 It pointed Chris to the diagnosis and allowed us a strong treatment. Everyone we speak to who suffers from this disease is amazed that Chris went from her first significant symptoms in January to diagnosis in April, to stem cell transplant/chemo in June. We were very aggressive about testing and treatment, but very lucky as well. Jenifer made a commitment to promote awareness with the hope that she could help others with an early diagnosis, and with Chris she succeeded. Now it is time to help Jenifer, and that is one of the reasons Stephen has decided to do the 1500 mile bike ride. This will be an incredible accomplishment, but I am sure he will pull it off, even if he rides in snow storms in the night. But even more incredible is the response he has received from so many people. It has blown him and us away at the generosity and willingness to help to raise this money for the Amyloidosis Research Foundation. He will be updating the status of things as this is completely his initiative, but suffice it to say the outpouring has been fantastic so far. He has tremendous support from sponsors from diverse as bike retailers to cookie companies to landscape architects. The sponsors then help him raise the money by supporting the cost of the ride itself. Stephen will of course give 100% of the donations to the foundation. Those donations are coming in daily in the mail or on the foundation web site. I cannot tell you how very much appreciated these are. Some are small and some are big, but Stephen just can't believe the number of donors. Even his friends at school have been raising money through various events. Just amazing. Stephen is as much interested in the number of donors as the amount, as it means that someone was willing to spend the few minutes it took to help promote awareness of Chris' disease. Thus, even small donations are very appreciated as it means one more person helps fight the cause.

Stephen has had some good press on his campaign. The regional newspaper came by and interviewed Chris and Stephen for their Sunday edition. Here is the link:
http://www.metrowestdailynews.com/archive/x1556828605/Spitz-Son-is-riding-for-moms-life

Chris continues to work hard at regaining her strength and fitness. Unfortunately the bad weather does not encourage much outdoor exercise. Her aerobic fitness is very important to her heart, so she tries when she can, but still feels very winded with her reduced heart function. Her cocktail of pills continues morning and night, but she has not complained about it. I am becoming more convinced based on conversations with doctors and my own knowledge of the disease that Chris will be doing oral chemo this spring or summer. We need to attack the remaining proteins (lamda light chains) still being produced and prevent any further deposition in her organs, especially her heart. The March visit will be the point where we decide the next steps. Chris keeps saying, "I just want to know where I stand", as we feel like we have more to do but no definitive action plan. But in about 4 weeks we will know, just as Stephen starts his ride.

Again here is the link to his site: http://chrisjourney.com/

Thanks to all.