I'm Fundraising to #CureFDMAS

Help me fight back against fibrous dysplasia/McCune-Albright syndrome (FD/MAS) by raising money for FD/MAS research!

FD/MAS is a rare and debilitating disease that has no FDA-approved treatment. It causes bone tumors to grow in place of normal bone, and often causes chronic pain, loss of mobility, hormonal imbalances, skin marks, deformity and more. There's no cure, and no way to slow it down. 

This is a cause that is especially important to me, and I really believe that your support can make a difference for people living with FD/MAS.

Thanks to our partners at the University of Pennsylvania Orphan Disease Center, 100% of the donations to this fundraiser will go DIRECTLY to cutting-edge research grants.

Plus, your donation helps keep Team FD eligible for $30,000 in matching funds from UPenn every year. Don't wait, donate today!

Help me reach my goal and #CureFDMAS!

 

Deanna's Fundraising Challenge 2019: 

This year, I bring you a complete grab bag of fundraising. DEANNA'S ADVENT CALENDAR OF FUNraising

Donation 1: Treat yo self/Free Space  Claimed! It's my donation. I treated myself. 

Donation 2: When I get my second donation, I will perform at least one hour of acts of service! i.e. physical charity work local to me. Claimed: My cousin Racquel! 

Donation 3: Humiliation! At a pre-arranged time, you can text me the link to any dance. I will be in a public place. Someone will be livestreaming me. I will do the dance with my full heart. Claimed: Anonymous stranger, my number is 917-513-(US legal drinking age)69. Text me!

Donation 4: Listen to your problems. Do you have a problem? Maybe more than one problem? And you just wish you had someone that you didn't have to feel guilty or embarrassed for talking to that problem? And for whatever reason, you don't have a therapist? TALK TO ME. 20 minute session. Claimed! Any time, AS!

Donation 5: Make me eat something. You get to decide what. If a culture considers it food, and it's available in my county, I'll eat it. Claimed! Kobi Tirey is the mayor of a weird flavortown I'll be checking out

Donation 6:  I will live out your New Years Resolution for a week. Because someone should do it. Claimed: The Ungers!

Donation 7: For one weekend, any time someone says a word that begins with Q, I'll say "Q is for quirks" and give no explanation.

Donation 8: RUN IT BACK. You can pick any of the previous donation prizes. Claimed: Amrita is having me live out her new years resolution, which is an amazing one tbh.

Donation 9: I'll comment on everything you post on Facebook for a month. You'll never walk alone. We'll get real close. It'll be great. Claimed: Sorry, Michelle skipped the line and I loved it.

Donation 10: I'll play ding dong ditch. Five doors or until I get caught

Donation 11: You can pick a new profile picture for me for a week (unless it's against my politics)

Donation 12: I'll make a playlist, just for you

Donation 13: Come to my home for dinner! 

Donation 14: You can select a picture I have to keep in a picture frame in my home for 2 months.

Donation 15: RUN "RUN IT BACK" BACK. You can pick any of the previous donation prizes. 

 

Want more information on Fibrous Dysplasia?

FD/MAS is a rare and debilitating disease that has no FDA-approved treatment. It causes bone tumors to grow in place of normal bone, and often causes chronic pain, loss of mobility, hormonal imbalances, skin marks, deformity and more. There's no cure, and no way to slow it down.  Bone-forming cells fail to mature and areas of healthy bone are replaced with this fibrous tissue. The severity of the disease covers a wide spectrum. It can affect a single bone and go unnoticed for years or can affect multiple bones or virtually every bone, start very early in life, and result in significant physical impairment, deformity and severe bone pain. FD can also be associated with birth marks (cafe-au-lait spots), and a number of endocrine problems such as precocious puberty, hyperthyroidism, low blood phosphorus, and excess growth hormone. When this occurs, this is known as McCune-Albright syndrome (MAS). The cause of the gene defect in FD/MAS is unknown, but the defect is neither inherited from the person's parents, nor passed on to the person's children. When the long bones (the bones of the legs and arms) or flat bones (ribs and pelvis) are affected, the bones weaken, may bow, are often extremely painful, and will frequently fracture. Affected bones in the skull often expand,cause facial disfigurement and, again, can be very painful both physically and emotionally. 

This Bike Ride POWERS Research

Your contribution to our team will bring us one step closer to beating this terrible disease. Every dollar raised is going to a DIRECT research grant for a treatment or cure for fibrous dysplasia, and the Penn Orphan Disease Center will be matching the money we raise up to an additional $30,000. In our first four years with the Million Dollar Bike Ride, we've raised about $500,000 for FD/MAS research. Funded studies go through a competitive review process. 

This Bike Ride is our search for a cure. It is the most direct way for the FD/MAS community to ask the most pressing scientific questions and fund the most promising therapuetic possibilities for a treatment.

Here's where funding went:

  • 2018:
    • $68,178 to Identification and Characterization of Novel Cell-Permeable, Small Molecule Adenylyl Cyclase Inhibitors for Future Development as Drugs to Treat FD/MAS, Dr. Charles Hoffman, Boston College
    • $68,178 to Single Cell Transcriptome Analysis of Skeletal Stem Cells Derived from FD/MAS Patients, Dr. Fernando Fierro, University of California Davis.
    • $68,178 to Elucidating the Role of GNAS Mosaicism in Fibrous Dysplastic Lesions, Dr. Kelly Wentworth, University of California, San Francisco
    • $68,178 Anti-resorptive drugs in fibrous dysplasia of bone: Studies on the effects of a RANKL inhibitor and Zoledronic Acid in a murine model of the disease by radiography, histology, and genome-wide expression analysis (NanoString), Dr. Mara Riminucci, Sapienza University of Rome. Learn more here
  • 2017:
    • $53,614 to Dr. Mara Riminucci of Sapienza University of Rome for her project: “Exploring the therapeutic potential of RANKL inhibition in Fibrous Dysplasia of bone: studies on murine transgenic models of the disease,” and
    • $53,614 to Dr. Yingzi Yang of Harvard School of Dental Medicine for her project:  “Mechanistic and Therapeutic Studies of Fibrous Dysplasia in a New Mouse Model.”
    • How do these studies fit in to the fight to #CureFDMAS?: Learn more here.
  • 2016:
    • $74,000 to Dr. Mara Riminucci of Sapienza University of Rome for her project:  “Transgenic models of fibrous dysplasia and models of intervention.”
    • How does this study fit in to the fight to #CureFDMAS?: Learn more here or from this update
  • 2015:
    • $58,500 to Dr. J. Silvio Gutkind of Development of Moores Cancer Center, UC San Diego for his project: "Next-Gen Animal Models for Fibrous Dysplasia(FD)/McCune-Albright Syndrome(MAS)"
    • $58,500 to Dr. Mara Riminucci of Sapienza University of Rome for her project: "Mouse Models of Fibrous Dysplasia as a Tool for Developing Rational and Effective Therapies."
    • How do these studies fit in to the fight to #CureFDMAS?: Learn more here or from this update.

For More Details and to Register to Ride

To learn more about the Million Dollar Bike ride, the research grant process, and how you can participate, Check out our page at https://secure.qgiv.com/event/curefdmas2018/

$815.72

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My Supporters

  • Amrita Sankar To happy living and healing! You are an inspiration. 2 weeks ago $25.00
  • Kait & Adam Unger 2 weeks ago $52.00
  • Michelle Reyf 2 weeks ago $18.00
  • Christian Tirey 2 weeks ago $52.00
  • Andrew Shenker Last month $500.00
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  • Andrew Shenker Last month $500.00
  • Deanna Portero March 2019 $100.00
  • Kait & Adam Unger 2 weeks ago $52.00
  • Christian Tirey 2 weeks ago $52.00
  • Racquel Redwood March 2019 $50.00
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