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Tribeca 360 NYC
June 14, 2022, 6 pm Eastern Time
Mission Sponsor | $50,000
VIP seating for 2 tables of 10
Special recognition evening of event
Listing on ifopa.org
Logo on registration page
Acknowledgement in IFOPA newsletter
Hope Sponsor | $25,000
VIP seating for 1 table of 10
Special recognition evening of event
Listing on ifopa.org
Logo on registration page
Acknowledgement in IFOPA newsletter
Diamond Sponsor| $15,000
Preferred seating for 1 table of 10
Recognition evening of event
Listing on ifopa.org
Logo on registration page
Acknowledgement in IFOPA newsletter
Emerald Sponsor| $10,000
Preferred seating for 1 table of 10
Recognition evening of event
Listing on ifopa.org
Logo on registration page
Ruby Sponsor| $7,500
1 table of 10
Recognition evening of event
Listing on ifopa.org
Logo on registration page
Sapphire Sponsor| $5,000
1 table of 10
Recognition evening of event
Listing on ifopa.org
Logo on registration page
Thank You to Our Gala Sponsors
Mission Sponsors
Donna & Gary Segal and Family
Hope Sponsors
LiRo Group
Diamond Sponsors
AECOM Tishman
Champion Specialty Services
The Maracic Family
Patti Family
Patti Spray Fireproofing
The Podolsky Family
Emerald Sponsors
George Coffinas and Kim Berry
El Sol Contracting
JRCRUZ Corp.
Meridian Capital Group
Sherwin-Williams
STV
Winston & Strawn, LLP
Ruby Sponsors
Bolivar Builders
The Greves Family
Sapphire Sponsors
ARC Excess & Surplus, LLC
Joyce & Frank Casano
Eaglestone
G4 Capital Partners
Goldberg Weprin Finkel Goldstein LLP
Lendlease (US) Construction LMB Inc
The Silverman Family
Skanska
EARLY CHILDHOOD
Like most children with Fibrodysplasia Ossificans Progressiva (FOP), Ashley showed no signs of the disease at birth except for the characteristic big toes. It appeared as though Ashley was born with bunions. In fact, the doctors diagnosed her with "congenital bunions." When she came home from the hospital, she was fitted with toe braces and prescribed a routine of physical therapy to try to straighten her toes. It was only later that we learned that the malformed toes serve as an important early sign of FOP.
THE PATH TOWARDS DIAGNOSIS
When Ashley was six years old, she broke her leg skiing. The doctor who treated her for the fracture noticed unusual growths on her leg and hip bones. We were referred to a specialist who diagnosed the growths as multiple osteochondroma, or bone tumors. This condition must be monitored as the bone growths can break off or become so large that they limit joint movement as they exert pressure on nerves and surrounding tissue. Monitoring this condition required trips to the hospital where full skeletal x-rays were performed. Through it all, and long before her diagnosis of FOP, Ashley participated in many activities including judo, taekwondo and ice hockey, but she especially enjoyed playing soccer. As the bone tumors grew, any type of strenuous exertion made Ashley’s ankles swell with extreme discomfort. An MRI revealed one of the tumors in the ankle joint area had grown larger causing pain and discomfort. Ashley's fears that her bone tumors would eventually limit her activity were now compounded by the fact that she would have to undergo a complicated surgical procedure to remove one of them. At the pre-surgery meeting, the surgeon, after noticing Ashley's toes, suspected she might have FOP. Through chance, the surgeon had seen a presentation given by Dr. Frederick S. Kaplan of the University of Pennsylvania, a pioneer in FOP research. The doctor advised that surgery could not be performed until FOP was ruled out as any invasive surgery could trigger explosive new bone growth. This news caught us completely by surprise as we had seen multiple doctors and no one had ever mentioned FOP. As we would learn later, due to the rarity of this disease, misdiagnosis of the disease is very common. After going home that day and researching FOP, we were devastated; we cried, we prayed, we did not believe this was possible. That night we called Dr. Kaplan and without hesitation he told us to come to Philadelphia to see him. Two weeks after our meeting with Dr. Kaplan, we received confirmation through genetic testing that Ashley had FOP. In an instant, our lives changed forever.
LIVING WITH FOP
Due to the progressive and unpredictable nature of the disease, Ashley as well as others with FOP must severely limit their physical activities and avoid any situation that might expose them to injury. In individuals where the disease has progressed, they are often unable to manage those daily activities we all take for granted. A flare-up can occur overnight locking a joint or removing the ability to perform a function required for daily living, robbing the individual of the ability to live independently. Only through continued research is there hope that a cure or therapy will be found so that individuals with FOP can live without the fear of what tomorrow may bring.
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