In March 2012, our granddaughter was diagnosed with Stage IV ARMS. In her exhausting search for information, Susan called Dr. Charles Keller who was gracious enough to say that he was coming East in a few weeks and agreed to meet with us to answer some of our questions regarding rhabdomyosarcoma. After talking for over three hours, Susan and I asked what we could do to help move ahead the current level of research. He asked for one thing – could we somehow create a community that would bring together the families, researchers and clinicians working in rhabdo, so that information could be shared across all of the participants. A few months later, FocusOnRhabdo.org was brought to the web.
Susan and I are incredibly pleased that so many, from all three areas, participate in the program. Our goal then, as now, is to provide as much information as we can for those new to the rhabdo community as well as those who are in the middle of the fight.
One thing that we searched for and couldn’t find was a support network for families and extended families because rhabdo is all consuming and so rare and complex that ‘normal’ support groups can’t help. FocusOnRhabdo.org was developed to fill part of this void. Today, with the ubiquitousness of Facebook, we have a monthly, online, video conference that is open to all who would like to attend.
FocusOnRhabo is not a 501c(3) organization and thus we don’t collect donations. Please support the many foundations that support rhabdo research and rhabdo families. Your donation is very important.
We are open for any and all suggestions on how to make FocusOnRhabdo.org a more comprehensive environment for all those involved with rhabdomyosarcoma – patients, families, researchers, clinicians and hospital staff. You can contact me directly at firstname.lastname@example.org.
BTW – our granddaughter is now 5 years post treatment and doing very well. 🙂
Alan Ehrlich & Susan Goldstein.
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