Team Samantha Rides Again!

Sorry about the recent delays in posting blog entries -- things are a bit crazy and I'm trying not to burden you with tales of my kids sniffles, etc. In any event, below are 2 messages I recently sent to the 200+ people who rode their bikes on Team Samantha to help us raise funds for research into Samantha's disease over the past 2 years. Most of you already know about our efforts in this regard (and yes, we'll get our usual fundraising letter out soon) but for those that don't, most the below should be self explanatory, or zap me an e-mail and I'll tell you all about it (over and over and over most likely).

Smiles, AJ

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Greetings everyone,

Since I sent the e-mail message below, 50 of you have taken a moment to register for Team Samantha again this year. For those of you who chose not to procrastinate, thank you! Many others of you have expressed a desire and intention to join us again this year -- thank you too, but please do us a favor -- the ride closed last year early and we want to make sure that we can accommodate everyone who is inspired to help us in our journey to help Samantha.

If you are able to join us for the BTS ride on May 20th, please register ASAP at the following link:

http://www.braintumorsociety.org/site/TR?pg=team&fr_id=1131&team_id=6960

If you're not able to join us but want to donate, or to fund raise as a "virtual rider" on our team, you can do so via the same link , or by mail using the forms on our team website -- www.teamsamantha.org. We updated our site with alot of new content this year, including a link to Samantha's blog and some fund raising support resources, so feel free to check that out when you have time.

In terms of a personal update, I've been a bit behind on our blog, but Samantha made it through the hard part of her last chemo cycle with flying colors. Cindy, ever vigilant, helped break the combative cycle we were in with Samantha by changing the schedule and bringing her in to the Dana Farber to ensure she would get a full dose of the anti-nausea medicine though her port via IV. This helped immeasurably and, while Samantha still protested mightily over actually taking the nasty stuff by mouth (the drugs she's on don't come any other way), she was able to get it down without being forced and held it down so she actually got the full dose. She's had some vomiting and is often quite tired (she's the only one to actually fall asleep at rest time in Kindergarten), this new approach took a much lower physical and emotional toll on all of us and we have been resting somewhat easier as a result. Her next MRI is March 14th, so that's a big milestone, followed by the "hard" chemo again for 4 days the following week, so we've got our challenges ahead, but as long as the scan comes back stable or better, it seems somehow more manageable now than it did before.

We continue to have our ups and downs as a family, but for the most part life feels more balanced or normal, whatever that means. Mikki and Ali are both in a good place lately and seem well adjusted. Samantha was the "important person" in her class last week (the title rotates every week) and she was positively glowing when she got present pictures of our trip to Italy last summer and lead the class in decorating masks like those in Venice.

One interesting story -- Samantha told another child in her class recently that she has something growing in her head that keeps her from remembering 10 plus 10 and things like that. This isn't actually true, but was a startling revelation to Cindy and I... how much does she know or understand about her condition? How much do other kids know and how, as she gets older, will things they say to her, or she overhears them saying about her, affect her psyche. We've always been candid with her about what's going on in an age appropriate way, but this was a new challenge for us. Fortunately the other childs mom reached out to us immediately so we knew what had transpired, and her teachers and psychologist were very supportive of helping advise us in how to best address the issue with her. Still, sort of a scary uncertain parenting moment...

In the meantime, since I corresponded with you last, we put the finishing touches on a $2 million grant to the Dana Farber Cancer Institute. This grant, funded by 5 families with similarly situated children, including us, will create the first reseach program in the country dedicated to studying Samantha's disease. The program will be led by Dr. Chuck Stiles, the co-head of biology for the DFCI, who was involved in the discovery of Gleevac, a novel targetted therapeutic drug which is truly changing the lives of patients in a wide range of cancers. We're fortunate that Chuck was willing to take on our cause and very hopeful that he'll be successful in drawing some of the most talented cancer researchers in the world at the DFCI and elsewhere, to look at Samantha's tumor type for the first time and/or in new ways.

Additionally, in late January, Team Samantha was profiled in the Wall Street Journal. I've always been very reluctant to expose our family in the press, and in fact have often intentionally obscured our role in fund raising and donating for research. My view on that issue changed 180 degrees when 2 of the other JPA families we met through FightJPA agreed to provide nearly half the funding for the DFCI program. As much as it pains me to say so, my mother was right: we need to find ways to reach out to new families to leverage the funds Team Samantha can raise and truly change the course of treatment options available to Samantha and kids like her. If PR can play a positive role in finding new families, so be it. I have posted that article for your review (and, if you like, for your use in helping us fundraise this year) at http://www.janower.net/070130-WSJ-Team-Samantha2.pdf. While the team is named after our daughter, YOU are Team Samantha and we could not be doing what we're doing without your help and support.

Finally, I'm excited to report that the Brain Tumor Society received over $2 million of very interesting grant applications from the national grant process they ran on our behalf. Peer review on these proposals will be conducted over the next 6 weeks and we hope to have a very high quality pool of projects to select from before the ride. Our ability to fund these projects depends, as always, on the amount we can raise through the ride and other fund raising mechanisms.

We're fortunate to be joined in the ride this year by 3 other teams raising money for the same purpose, TeamTJ (www.teamTJ.org), Team Lucy (www.teamlucy.org) and Team Jake (www.teamjake.org). Their stories are like ours --- they, like us, face their children at the dinner table each night and know that they have no choice -- we MUST succeed in creating better, less toxic treatment alternatives for our kids. With your help over the past 2 years we have come far, yet we still have miles and miles to go... Thanks for being there for our family on this long journey.

All the best from my family to yours,

AJ

-----Original Message-----
From: Janower, Andrew
Sent: Monday, January 22, 2007 11:49 PM
To: Janower, Andrew
Cc: 'cindy@janower.net'
Subject: Team Samantha Rides Again!
Importance: High

Dear Friends,

This spring we have once again formed a team for the Brain Tumor Society bike ride in honor of Samantha. Over the past two years, Team Samantha has been by far the largest and most productive team at the ride, comprising 10-15% of the riders at the event and raising over $850,000 for brain tumor research. This year, the BTS has again agreed to allow all funds raised by Team Samantha to flow into a restricted fund which will only be used to fund the most promising research in JPA's, Samantha's tumor type.

At this time last year, we could only hope to turn this arrangement into tangible results. Samantha's tumor type was a virtual orphan in the medical research field, suffering from doom loop whereby a lack of historical funding led to low researcher interest in the disease.

A year later I'm proud to say that we've accomplished a tremendous amount in getting an increasingly large number of scientists to pay closer attention to this silent killer. The day after the ride our family co-sponsored the first ever scientific workshop dedicated to solely to JPAs, with over 25 researchers from around the world in attendence. To date, we have funded two phenominal grants which came out of that event, bringing proven technologies developed to cure more common forms of cancer to Samantha's tumor type for the first time. Additionally, by mid-February, we expect to have the results from a nationwide competitive grant process that the Brain Tumor Society is running on Samantha's behalf, and hope to be in position to fund a series of outstanding peer-reviewed research projects out of that effort. Finally, in collaboration with several other families with similarly situated children, we are in the final stages of negotiating a multi year program grant with a leading cancer hospital.

In short, we're leveraging the time and energy you have invested in Team Samantha to achieve great things. As many of you know, Samantha's tumor recently resumed growth and she is back in treatment. Her treatment alternatives are relatively few beyond this second form of chemo, and the next best alternatives are increasingly experimental, toxic or both. In short we're in a race against time to fund research which can lead to new treatment alternatives, and we once again need your support.

While our official fundraising campaign won't begin for another month or so, I wanted to reach out to you now to ask you to write the date of the ride into your calendar -- May 20, 2007 -- and also to ask you to register for the ride ASAP if you can join us on that date. Last year the ride sold out early which caused some angst amongst the procrastinators among us, and knowing who plans to ride early on helps us with planning in general. The link to register as a member of our team is:

http://www.braintumorsociety.org/site/TR?pg=team&fr_id=1131&team_id=6960

On behalf of our entire family, we deeply appreciate your support for our efforts and hope to see you out there on May 20, 2007.

All the best,

Andrew Janower (AJ)

P.S. Please be sure to register as a member of Team Samantha using the link above, as funds raised via general registrations for the ride won't get credited to our research account.

P.P.S. For those of you interested in an update on Samantha's situation, we started a blog in late September when Sammi went back into treatment. We're happy to talk about what's going on with her health, or lives, or otherwise, but please help us maintain our balance by catching up on the blog first (http://www.samantha-j.blogspot.com)