Happy to Help. Family s Bone Disorder Inspires Walk Raising Money for Cure

Transcription

1 Return of Garden in the Woods Open for the spring History Center Marks 125 Years Celebrating the past Age Is Just a Number for Athlete Running Strong at 77 Happy to Help Family s Bone Disorder Inspires Walk Raising Money for Cure

2 Family Raises Money to Fight Serious Bone Disorder Osteogenesis imperfecta, also known as brittle bone disorder, has affected several generations of the Wymans. by Dick Wyman Community contributor The Wyman family of Framingham suffers from a form of osteogenesis imperfecta, also known as OI. It is a rare brittle bone disorder affecting approximately 40,000 Americans. Severe cases can be fatal and children break bones simply by rolling over. Five generations of the Wyman family have had and continue to battle the disorder, and they have worked tirelessly for more than 25 years in many capacities with the Osteogenesis Imperfecta Foundation to help raise money for research that will lead to a cure Christine Wyman Rossi, a fourth generation of the Wymans with OI, had more than 20 fractures as a child. But those experiences did not prepare her for the day in 2004 when doctors told Christine her 4-week-old son Jack, who also has OI, had two broken femurs and would need a full body cast. On that day, she said I want to go from I want to make a difference to actually making a difference, so my son and niece Siena as well as other children with OI would have a better life Christine Wyman Rossi, a fourth generation of the Wymans with OI, had more than 20 fractures as a child. But those experiences did not prepare her for the day in 2004 when doctors told Christine her 4-year-old son Jack, who also has OI, had two broken femurs and would need a full body cast. To accomplish her goal, Christine and her sister Michelle Potorski started the first Unbreakable Walk for OI that year with the collective efforts of the entire Wyman family, and they have never looked back. The family has raised more than $500,000 in the nine walks that have taken place in Framingham. Because of the success of the local Walks for OI, their event has become the standard for all Walks for OI in the country to help raise money for research to find a cure. Christine s successes for her event have been recognized locally with her selection in 2009 by Framingham State University as its volunteer of the year and by her employer EMC as the recipient of its 2010 top volunteer service award of $10,000 to Continued on next page Dr. David Vernick (second from left) received the Unbreakable Spirit Award in 2011 for his work with OI patients suffering from hearing loss. The Unbreakable Spirit Walk for OI will feature state police, who will offer fingerprinting and other safety services for children. Photo courtesy of Chrisinte Rossi 14

3 From left, Barbara Stanley Gibson, Christine Rossi and Jack Rossi. Gibson, who was Christine Rossi s aunt and died in 2012, was a tremendous advocate for the cause. 15

4 Christine Rossi and her sons Hugo and Jack attend the Unbreakable Spirit Walk for OI with Christine s parents MaryEllen and Dick Wyman. Continued from previous page the Osteogenesis Imperfecta Foundation. At that time, EMC s CEO Bill Teuber talked about OI and Christine s work to help find a cure in front of 43,000 employees word-wide, and Christine referred to that day as one of her greatest moments in her life because her mission is awareness of OI. Also, the Osteogenesis Imperfecta Foundation has recognized the importance of Christine s contributions to help find a cure by selecting her as the National Volunteer of the Year in 2009, and announced earlier this year about her selection First Year of The Walk for OI 2005 The event has raised more than $500,000 for research of the rare bone disease that will eventually find a cure. for the 2014 National Lifetime Volunteer Award, which is the highest recognition given to those making a difference to help find a cure. The award will be presented at the National Conference this Summer in Indianapolis. The Wyman family looks forward to its 10th Walk for OI that will take place Sunday, May 4 at Framingham State s athletic field from noon to 4 p.m. The event will involve hundreds of participants raising pledges prior to the event or making individual donations on the day of the event. Many businesses will continue lending their financial support, with Bernardi Toyota as the title sponsor for the 10th consecutive year. I want to go from I want to make a difference to actually making a difference, so my son and niece Siena as well as other children with OI would have a better life Christine Rossi, on her decision to create the Unbreakable Spirit Walk for OI The family fun day will feature live entertainment, food, raffles, silent auction tables and many kid s events planned under the direction of The Kiddie Lodge preschool in Fram- 16

5 The Facts About OI People with osteogensis imperfecta are born with the disorder, which affects them throughout their lives. Jack Rossi wears a cast after breaking his arm due to his rare bone disorder osteogenesis imperfecta. ingham and parents from St. Bridget s school in Framingham that will include races, games, sand art, face painting and much more. The family has raised more than $500,000 in the nine walks that have taken place in Framingham. Osteogenesis imperfecta, more commonly known as OI or brittle bone disorder, is a genetic disorder that causes fragile bones that can easily be broken. A person is born with the disorder, and affected throughout his or her lifetime. There is no cure, but research toward finding one is ongoing, and experts say one could be discovered within the next decade. Here are some facts about OI from the Osteogenesis Imperfecta Foundation s website: People with OI could also have muscle weakness, hearing loss, fatigue, joint laxity, curved bones, scoliosis, blue sclerae, brittle teeth, short stature and restrictive pulmonary disease in more severely affected people. A person with mild OI could experience a few fractures, but those with severe forms could suffer from several hundred in a lifetime. Existing treatments focus on minimizing fractures, maximizing mobility, maximizing independent function and general health. Treatments being studied include several medications, growth hormones, increased vitamin D intake, physical activity and potential for gene therapy Learn more at oif.org and walkforoi.org. Jonathan Friedman The Wyman family appreciates the kindness and generosity of those who has contributed their time, effort and/or donations to the Unbreakable Spirit Walk for OI since 2005, and is hopeful this year s walk will help the family reach its goal to raise an additional $50,000 to help fund the research needed to find a cure for OI, so Jack, Siena and other children with the disorder will have a better life. To learn more about the Unbreakable Spirit Walk for OI, visit walkforoi.org. To learn more about OI, or if you would like to make a donation for research, visit oif.org or you can mail a donation, payable to OIF to Christine Rossi, 39 Lorraine Drive, Ashland, MA Like this story? Tell us why. hibumagazine.com/survey Cousins Jack Rossi and Siena Potorski both suffer from osteogenesis imperfecta and are regular attendees at the annual walk that raises money to find a cure. 17

6 Send us your photos Unbreakable Spirit Against Bone Disorder Framingham State will be the site of the 10th annual Unbreakable Spirit Walk for OI on May 4 to raise money for research on osteogenesis imperfecta, a bone disorder affecting several generations of the Wyman family, who host the event. Learn more on Page 14 and at walkforoi.org. Left, Dick and MaryEllen Wyman attend the Unbreakable Spirit Walk; Center, Christine Wyman Rossi receives Framingham Youth Football & Cheerleading s Heroes Among Us award for her work on the Unbreakable Spirt Walk, Right, the Rossi family attends the Unbreakable Spirit Walk. Photos courtesy of Christine Rossi Left, Students in the class of Jack Rossi, who has osteogenesis imperfecta, get involved in the event every year by making shirts and walking the day of the event as well as wearing the shirts to school the day before the event. Center, Brothers Hugo and Jack Rossi enjoy the event. Right, Cousins Jack Rossi and Siena Potorski both have osteogenesis imperfecta. Photos courtesy of Chritine Rossi 25