Fall 2010 - National Marfan Foundation

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18 Connective Issues Third Heartworks Westchester:ANightof Celebration The friends and family of Barbara and Jonathan Lerman, of Chappaqua, NY, continued their momentum this year with another successful Heartworks Westchester. Their third annual event, in honor of the Lerman’s seven-year-old daughter Sydney, was held on May 1 at the Metropolis Country Club, in White Plains, NY. More than 200 people attended for a fun night of dinner, music and fundraising. The event raised $286,000, including $30,000 on-site during the Fund-a-Need appeal. After only three years, Heartworks Westchester has raised $727,000. “Barbara and Jonathan and their amazing committee show unbelievable enthusiasm and commitment year after year,” said Jennifer Grignoli, NMF Director of Development. “It is apleasuretoworkwiththemandsupporttheirefforts,which benefit the entire Marfan community. We hope to take the Heartworks event to other cities around the country and look forward to collaborating with volunteer groups to make this happen from coast to coast.” SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES SAVE THE DATES Fall 2010 The Lerman family: Grandmother Judi,fatherJonathan, daughters Sydney andCarly, motherBarbara, and grandfather Jerry Inaugural Heartworks Atlanta November 18, 2010 Heartworks New York City April 7, 2011 Heartworks St. Louis February 26, 2011
The Saturday before Thanksgiving, November 20, is National Family Volunteer Day. Co-sponsored by the Hands On Network and The Walt Disney Company, this special day was designated to demonstrate the power of families who volunteer together to support their favorite cause in the communities in which they live and serve. The NMF provides many opportunities for family members to volunteer in ways that result in significant contributions to the Foundation mission areas of education, support and research. Family volunteering is not new to the Marfan community. From setting up a display at a local health fair to organizing afundraisingevent—largeorsmall—therearemanyways that families can participate in volunteer activities to benefit the NMF. National Volunteer Network Join the FamilyVolunteeringMovement: Participate in Family VolunteerDay, November 20 Chris Sears, of Medford, NY, her father Glenn Stidham, of Nesconset, NY, and their family, held the 12th Annual JAFGO(Just Another Family Golf Outing)on July 23, attheMill Pond Golf Club. Theirentirefamily and many friends work hard onthecommittee all year as atributetoChris’son, Michael, 22, who has Marfan syndrome. This year’s event was the largest ever, with 124 golfers and an additional 40 people in attendance for dinner.Itraised$10,500 for the NMF, bringingthe 12-year totalto nearly $150,000. The Pawell Family of Cortlandt Manor, NY,held the 2nd Annual Jonathan Pawell Birthday Memorial Fundraiser on June 19. About 200 people came and enjoyed carnival-stylegames, prizes, food and aliveDJ. They raised $2,700 this year for theNMF inmemoryof Jonathan. Pictured at left: Jonathan’s grandmaGayle, mom Marisa,dad Todd, sister Kayla,and brothers Trevor and Nathan. Many of our member families have been involved in fundraising and awareness activities for many years. These include: • Campbell Family of Oklahoma, who organized their 5th Motoring for Marfan Car & Bike Show this year. • Kelly Berklite and her daughter, Jessica, of Centreville, VA, who organized a Foster’s Grille restaurant fundraiser. • Members of the Makanoff Family of Cherry Hill, NJ, who participated in raising funds and awareness when RENT came to Philadelphia last year. • Randy Schwartz and her daughter, Carli, participated in the Montauk Lighthouse Sprint Triathlon in Montauk, in honor of Carli’s sister Aryn, who was recently diagnosed with Loeys-Dietz syndrome. Volunteering as a family provides quality time for busy families, strengthens communication and bonds, and positively impacts our local Marfan and related disorders communities across the nation. Volunteering together also teaches positive values to children. Family volunteering that includes the children creates life-long volunteers and helps generations in the future. The NMF wouldliketohighlightfamilies who volunteertogether during the month of November—and during the rest of the year as well. Please send a photo and a description of your volunteer project to Kathy Jeffers,NMF Managerof Volunteer Development,at kjeffers@marfan.org. Volume 29, No. 3 19
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Page 3 and 4: Connective Issues Atenolol vs. Losa
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Page 13 and 14: Connective Issues Maya Brown-Zimmer
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Page 17: On July 30, sixteen NMF members par
Page 21 and 22: People &Events Casino Night The 6th
Page 23 and 24: Connective Issues Mimnagh, Zimmerma

Fall 2010 - National Marfan Foundation

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