I'm Fundraising to #CureFDMAS

Please help us raise funds //\\ To fund medical research //\\ To cure FD/MAS //\\ Annual Million Dollar Bike Ride //\\ June 8th, 2019 //\\ http://www.milliondollarbikeride.org

Dear All, 

#THANKYOU to all who have been generous to us and donated funds in the past few years. 

This spring, it will be my 5th year in a row that I will be biking for an excellent cause.

We hope we can count on your help one more time. 

Kids like my son and Carly who is the daughter of Fred and Cindi, my bike team captains, have 

been battling with a rare condition that affects the bones. It's called Fibrous Dysplasia (FD). 

I will joining my team captains Cindi and Fred in the 'Million Dollar Bike Ride', to raise funds for

'Rare Disease Research'. 

The Penn Medicine Orphan Disease Center (ODC) is sponsoring the Annual Million Dollar 

Bike Ride on June 8th, 2019 to raise more than $1 million for research in rare diseases. 

http://www.milliondollarbikeride.org


Join our team as we fight back against fibrous dysplasia/McCune-Albright syndrome (FD/MAS) \

by raising money for FD/MAS research.


Please donate to this good cause. 

You can donate on this page and shoud you decide you can donate anonymously as well. 


Thank You 

Yarlagadda Kiran Kumar(Kiran), Murty & Family

 

P.S: Our team's fund raising URL is https://secure.qgiv.com/event/2019mdbr/

--

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!

Want more information on Fibrous Dysplasia/McCune-Albright syndrome?

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
100% of the donations to this fundraiser will go DIRECTLY to cutting edge research grants, with the Penn Orphan Disease Center  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 over $570,000 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/2019mdbr/

$1,016.04

achieved

$1,000.00

goal

of your goal reached

My Supporters

  • Uday Pidikiti 4 weeks ago $52.00
  • Anonymous 4 weeks ago
  • Anonymous Last month $105.04
  • Rama Donepudi Last month $100.00
  • kavitha kanuri Last month
  • View More Recent Supporters
  • Angelica Mariani With much Love and Blessings ! Last month $200.00
  • Anonymous Last month
  • Rama Donepudi Last month $100.00
  • Anonymous Last month
  • Uday Pidikiti 4 weeks ago $52.00
  • View More Top Donors