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Individual Fundraisers

2017 Panasonic New York City Triathlon

Mr and Mrs Seth and Talia Cohen

This past May my daughter Freddie turned to me and said, "Momma, you always lose your voice."  Ten minutes later I was having flashbacks from when I initially lost the hearing in my left ear and thought nothing of it...but ended up having open brain surgery six months later.  So this time I wasted no time and immediately called my brain surgeons. It turns out Freddie was onto something as doctors discovered a new (benign) growth, this time on on my vocal chord, hence my diminished voice.  I had it removed later that week.   Afterwards, while I had virtually no voice I had all the time to think and, more importantly, I had a very real reminder as to what it's like for people with NF2 each and every day.  You are on constant edge, never knowing when or where benign tumors will strike next, or what these tumors are doing to surrounding nerves and organs.  I have never missed a single exam or scheduled MRI, and while the growth on my vocal chords could be easily removed, it hit me hard.  In this specific and super recent instance the emotional toll was far worse than my medical condition as I escaped relatively unscathed (just a bit quieter and hyper-focused on voice therapy so that I can learn how to hear through vibrations rather than through sound).  Nonetheless, I am extremely grateful for NF2, for the doctors and providers I've encountered, and for the daunting yet eye-opening perspective that I've gained in recent years (first with my brain surgery and now with my voice).   That being said, NF2 is a rare genetic disease and the resources to find a cure are limited in terms of both research dollars and sample size.  Accordingly, Seth and I have promised to support CTF and its incredible work towards finding a cure for NF2.  We've also committed to help spread the word about CTF.  One-half of us is going VERY outside of her comfort zone in reaching out to our friends and family to ask them to support CTF because  the struggle is real. The other half of us is RARELY outside of his comfort zone and is reaching out to our friends and family to ask them to support CTF because he knows the NF2 struggle is real as he sees it first hand.  If that's not enough reason to donate, we will also be running together as part of CTF relay teams in the 2017 NYC Triathlon in two weeks, our first sanctioned sporting event as a couple in almost nine years of marriage.  And, if even that's not enough reason to donate, just know that if you're on this email it's because we love you and you have to at least pretend you love us back by donating to this great cause.  We will be forever grateful for your support and promise not to let you down on race day. Love, T and Seth 
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$26,615 raised (106%)
Help me raise money for NFE 2017 Panasonic New York City Triathlon

Sara Kohlberg

I Know A Fighter   Any race can be a life changing, but my next race that I do will help save lives. As part of the Children's Tumor Foundation NF Endurance Team, I am accomplishing things I never imagined I could accomplish. Training can be challenging, but for me the finish line is just the beginning. My race will help fund research for NF or neurofibromatosis.  I hope you will support me in my fundraising efforts   NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF is under-recognized and underdiagnosed yet affects more people than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined.  The Children’s Tumor Foundation funds critical research to find treatments for NF.     Please consider making a donation to my fundraising page to help #ENDNF.
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$2,136 raised (107%)
Help me raise money for NFE 2017 Panasonic New York City Triathlon

Chrissie Connors

I Know A Fighter   Any race can be a life changing, but my next race that I do will help save lives. As part of the Children's Tumor Foundation NF Endurance Team, I am accomplishing things I never imagined I could accomplish. Training can be challenging, but for me the finish line is just the beginning. My race will help fund research for NF or neurofibromatosis.  I hope you will support me in my fundraising efforts   NF causes tumors to grow on nerves throughout the body and can lead to blindness, bone abnormalities, cancer, deafness, disfigurement, learning disabilities, and excruciating and disabling pain. NF is under-recognized and underdiagnosed yet affects more people than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined.  The Children’s Tumor Foundation funds critical research to find treatments for NF.     Please consider making a donation to my fundraising page to help #ENDNF.
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$50 raised (3%)

Fundraising Teams

TeamRaph

TeamRaph

5 Members
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$51,451 raised (515%)