Please join Ian Desmond, shortstop of the Washington Nationals, as we raise awareness and support research to end neurofibromatosis (NF). This disease can cause tumors to grow along nerves throughout the body and affects roughly 1 in 3,000 people worldwide, yet it is not well known by the public and remains a mystery to the scientific community. Help us to change that now by joining Ian's team during May Neurofibromatosis Awareness Month.
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(photo by Julia Payne)
Ian Desmond is the starting shortstop for Major League Baseball's Washington Nationals. Ian is an All-Star, a two-time winner of the Louisville Slugger Silver Slugger Award, and a Rawlings Gold Glove Award finalist. Ian is only the seventh shortstop in league history to accomplish the feat of 20 home runs and 20 steals ("20-20") in consecutive seasons.
Ian is heavily involved in community activities and charitable endeavors. In addition to various other causes he supports, he currently serves on the Board of Directors of the Washington Nationals Youth Baseball Academy. He was nominated for the 2011 Roberto Clemente Award, given annually to the MLB player who best exemplifies the game of baseball, sportsmanship, community involvement and the individual's contribution to his team.
"Spread the Glove" is a movement started by Ian that encourages fans to identify exemplary charities and to support these charities through donations and awareness.
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NF encompasses a set of distinct genetic disorders that can cause tumors to grow along various types of nerves. NF can also affect the development of non-nervous tissues such as bones and skin. NF has been classified into three distinct types: NF1, NF2 and schwannomatosis.
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NF affects more than two million people worldwide, making the disease more prevalent than cystic fibrosis, Duchenne muscular dystrophy, and Huntington's Disease combined. The disease is worldwide in distribution, affects sexes equally, and has no particular racial, geographic, or ethnic distribution.
Though most cases of NF1 are mild to moderate, NF1 can in some cases lead to disfigurement; blindness; skeletal abnormalities; dermal, brain, and spinal tumors; loss of limbs; and malignancies. NF1 also has a connection to developmental problems, especially learning disabilities. NF2 is distinguished by tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness, severe balance problems, and sometimes tumors elsewhere in the nervous system. Schwannomatosis can cause the development of multiple schwannomas on cranial, spinal, and peripheral nerves, resulting in problems with chronic pain.
This informative video is less than two minutes long, and covers all of the most important facts about this disease:
For more information, please visit our partners at the Children's Tumor Foundation at the following link: ctf.org.
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Every dollar raised is important to NF research. As a verified non-profit Indiegogo campaign, this fundraiser will send proceeds directly to the Children's Tumor Foundation (CTF). So much remains unknown about this prevalent disease that affects women and men of all races and nationalities. Through the Children's Tumor Foundation, your funds will benefit research and outreach programs that will help to understand the causes and symptoms of this disease, and may help to end it -- and perhaps other diseases as well.
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CTF is a non-profit 501(c)(3) medical foundation, dedicated to finding effective treatments for the millions of people worldwide living with NF. For its superb level of transparency, accountability, and financial efficiency, CTF has earned a four-star rating (highest) from Charity Navigator (link here), and is a BBB Wise Giving Alliance Accredited Charity (link here).
Donations to CTF, including proceeds from this campaign, will be used directly for research, public education, patient support, and foundation fundraising. Over 80% of all donations to CTF go towards research and programs. The following infographic shows the usage of funds:
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Through CTF funding, the foundation's NF Clinic Network has treated over 15,000 patients per year in 44 clinics. The portfolio of research includes the following:
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For more information, please visit our partners at the Children's Tumor Foundation at the following link: ctf.org.
In exchange using the Indiegogo platform to help raise money for CTF, approximately 7% or less of the proceeds of this fundraiser will be used to pay Indiegogo and third party payment processing firms for services rendered in order to complete the campaign. All costs of perks, such as tickets and shirts, will be borne by the campaign organizers.
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Update: **New perks added!**
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While we hope some of you will donate to this great cause to support NF research, we also want to make sure we offer some great rewards for those of you who may want to get involved.
We've already added a lot of awesome perks, but make sure to check back frequently as we plan to add even more. Here is a sample of what we're doing:
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Certain donations, or a portion of those donations net of estimated fair market value of perks received, may be tax deductible as permitted by law. Please consult with your tax adviser for specific deductions that can be taken.
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The concept of "Spread the Glove" means more than just donating, it means amplifying the voices of worthy causes.
We hope that our story, and maybe some of the rewards, have encouraged you to take part in this Indiegogo fundraiser. Even if you don't donate money to the cause, you can still be a huge help for us during Neurofibromatosis Awareness Month. Please remember that one of the most important reasons that we are doing this fundraiser is to raise awareness for NF. Each and every additional person who learns about this disease is so valuable in the fight to End NF.
Please share this campaign with your friends, whether in person or on social media. Click the share buttons to tweet about this campaign or to post it to your Facebook page, or email the link below. Remember to use the hashtag #EndNF!
The month of May is special for this cause; please help us to spread the word. Thank you for your support!
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