Thank you all for supporting my mom and our family during this journey! It really means the world to us! Thanks to all of you the thermometer is starting to rise… let’s keep it moving!
I will be holding a fundraiser on March 1, 2014 from 7-10 PM at Barnaby’s of West Chester beef n’ beer style. $30/person and $55/couple for a 3 hour open bar, buffet, raffles, and tons of fun! If you around the area, please come join us in the fight to knock out MS!
Nick and I are both selling t-shirts. They are pretty awesome, so you should pick one up! Rosie the Riveter shirts are $15; Knock out MS fists are $12.
There are Marianna Hoagies being sold starting today thanks to Dave & Deanie. A cash bingo on March 9th, & a benefit dance at the Clarence Moose (tentatively March 1). Thank you to the committee in Snow Shoe for all you are doing. It is truly heart warming & amazing.
My brother Jon held a dinner at the loading docks and raised $1,064! Thank you Jon & Sharon for all your hard work, and to all the people who attended!
I am also so thankful for all my friends and family who have donated through this blog. I cannot express my gratitude enough.
Thank you all for Raising the thermometer!!!
I know everyone is wondering why we are going all the way to Russia for the stem cell transplant. I will tell you, that it wasn’t an easy decision. We all wish that we could stay in the country to get this procedure completed. After a lot of research, we realized that unfortunately, it just wasn’t an option for my mom for a few reasons.
This treatment may be available to the public in the United States in, oh 10+ years. But, Mom, and anyone with MS, just does not have that kind of time to wait. She’s getting worse and unless we do something TODAY, the progression continues.
There are a few clinical trials available in the United States. We did check into those. Chicago was the main one. It is $150,000 dollars for a clinical trial, that Mom would not be eligible to receive. The age limit is 55 years old, and it is only for those in the relapsing-remitting phase of MS. (Mom is 56, and in secondary progressive). The thing with clinical trials is that they need good results to get funding and to get it (cross your fingers) approved and available for the public.
Russia, well from the moment we heard about it, it was almost too good to be true. I don’t know about you, but when things seem that good, I immediately distrust it. It helps that mom was able to be in contact with Brooke, not long after she came back from Russia and her HSCT adventure. We also started following the blogs of the others that were going through HSCT with Dr Fedorenko. Brooke gave Mom Dr. F’s contact info, and he immediately responded. There is something to be said when your doctor makes you feel comfortable, acts like they have time for you, and is 100% invested in making sure this works! There is also the money aspect, $40,000 is much less than it is in the USA (even with the added expenses of traveling to Russia). We are also super impressed with the lengths they go to to keep things sanitized and the importance that is placed on the isolation phase. Her immune system is being “rebooted” so it is very fragile during this time. Dr F and his team’s track record speaks for itself.
This was not a decision that was entered into lightly. We have troubled over this, researched, discussed as a family, and finally came to a decision. It is time to KNOCK OUT MS and break free in Moscow!
Hello All! I wanted to start this blog to keep everyone up to date on our journey to knock out MS! Mom isn’t much of a “blogger” so I thought it would be nice to let y’all know what is going on every step of the way. It isn’t going to be easy, and I’m sure there will be ups and downs, highs and lows throughout the entire process. This isn’t an individual journey; she is going to need the support of the community, family, friends, and even strangers to make this happen. She has been trapped in an MS prison for over 20 years now, and HSCT and Dr. F are giving her hope to break free and start living again.