August Newsletter Vol. 5 Issue 8 British Toddler, Double Amputee Comes to A Step Ahead for New Prosthetics Harvey Parry, a 2 1/2 year old double amputee from Northern London, received two new above knee prostheses from A Step Ahead Prosthetics after he was unable to get appropriate prosthetic legs in England. When Harvey was 15 months old, he contracted the potentially deadly virus meningitis meningococcal and developed septicemia. As a result of the disease, Harvey had both legs amputated above the knee and three and half fingers amputated on his right hand.  The Parrys were unwilling to accept England's National Health Services (NHS) policy of waiting until Harvey was 5 years old to receive fully functioning legs with knees and feet. After more than a year of fundraising efforts to raise the funds to purchase Harvey's prosthetics outside of the NHS of England, his parents, Carol and John, contacted A Step Ahead Prosthetics after they exhausted the prosthetic services that they were eligible for through the NHS in England. The Parrys are breaking ground by going outside the NHS for Harvey's artificial legs and risking the possibility that Harvey will not be able to receive rehabilitation services based on current NHS rules. After three days at A Step Ahead Prosthetics, Harvey received his new custom prostheses. He was so excited when he began to learn to walk with his new prosthetic legs that he practiced his skills until 3AM in the hotel hallways. Harvey and his family are planning to return home to London in August. More information about Harvey's story including photos and videos can be found at: http://www.harveyparry-appealfund.com/
Patients in the News Kelly Bruno passed two rounds of tryouts and will be serving as a ballperson for the United States Tennis Open Championships at the Billie Jean King National Tennis Center in Flushing Meadows, New York. Kelly will be the first amputee to work as a ball person at this prestigious tennis event. The US Open runs from August 19th through September 7th. Kelly is looking forward to this new athletic experience. "Being a ballperson at the US Open will be a great opportunity to show that nothing is impossible. Through what I do, I hope to encourage other people of all abilities to stay active, even if it means trying something new." Kenny Bontz won the overall title at the Eastern Amputee Golf Association Championship at Bethpage State Park on the tough red course and was featured in a story in Long Island Newsday: http://www.newsday.com/sports/golf/ny-spligolf0731,0,7635513.story
On a hot and muggy Sunday in July, six Team A Step Ahead triathletes swam 1500 meters in the Hudson river filled with jellyfish, biked 25 miles along the west side of Manhattan, and ran 6.2 miles through Central Park while competing in the annual Nautica New York City Triathlon.  | |  | Shlomo Nimrodi | | Kelly Bruno |
Despite the weather and the poor swimming conditions, the team came through with great performances. Sandy Dukat, competing in her second NYC triathlon, won the above knee amputee divison for women and finished ahead of the entire above knee amputee male division with a time of 3:11:32. One year ago, Michael Laforgia watched his teammates race in Central Park and said, "I am going to do that next year." With a time of 3:34:48, Michael completed his first Olympic distance triathlon. Shlomo Nimrodi bettered his 2007 time in this event by four minutes with a time of 3:40:01 in the above knee division.  | |  | Michael Laforgia | | Kati Rooney |
Kelly Bruno took first place in the female below knee divison with a time of 2:46:25. Kati Rooney, also competing in her first Olympic distance triathlon, took third place in the female below knee divison with a time of 3:23:41. Marcos Corti-Maderna finished with a time of 3:06:07 in the male below knee divison.  | |  | Marcos Corti-Maderna | | Sandy Dukat |
On the same day as the NYC triathlon, a few hundred miles away in New York's Adirondack Mountains, Tommy Koehler endured wind-swept rain throughout the entire Ford Ironman Lake Placid to finish in a time of 11 hours and 48 minutes. "These were the worst weather conditions I have ever competed in," Tommy commented after posting a personal record for the Ironman distance. John Tartaglio completed his first 1/2 Ironman competition at the inaugural Amica Ironman 70.3 in Rhode Island in 7:25:47. The Ironman 70.3 series consists of a 1.2 mile open water swim, 56 mile bike ride, and 13.1 mile run. Competing with a handcycle and push rim wheelchair customized by A Step Ahead, John finished strong after a crash at mile 52 on the bike course that nearly forced him out of the race.  | John Tartaglio Completing
the Amica 1/2 Ironman |
Beijing Paralympics Three Team A Step Ahead athletes will be competing at the 2008 Summer Paralympic Games in Beijing, China from September 6-17. Jesse Karamazin will be competing in the rowing competition in the adaptive 4 with coxswain divison. Alison Jones, a downhill skier and cyclist, will be competing in cycling in her 4th Paralympic Games. Lee Carter will represent Canada on the wheelchair tennis team.
 Connor Tucciarone climbed Ampersand Mountain with his Boy Scout troop. Ampersand Mountain is in the New York Adirondacks and is 3,352 feet in elevation with 1,775 feet of ascent in the climb. With his swimming background, Connor is working this summer as a swim instructor and a lifeguard at the Somerset Hill YMCA. 
Research In addition to the research that we are conducting with Adelphi University on runners and the flex run foot, A Step Ahead will be conducting research with the Touro College Doctoral Physical Therapy program, entitled,? Reliability and Reproducibility of the Temporal and Spatial Parameters of Gait in Individuals with Lower Extremity Amputations Utilizing a Ceterus Foot". If you have a ceterus foot we will be in contact with you regarding your participation in this research study.
Law to Back Disabled in Sports, Physical Education Sought USA today reported on the following initiative to enact legislation to provide equal opportunities for people with disabilities to participate in sports and physical education: The U.S. needs a law that amounts to Title IX for the disabled, advocates said in separate Capitol Hill briefings on the House and Senate sides on Tuesday July 22. "Title IX is a landmark law that launched so many opportunities for women," said Aimee Mullins, president of the Women's Sports Foundation. "I think a similar law for the disabled could have the same impact."
Title IX bans sex discrimination at schools receiving federal funds. This month Maryland enacted the Fitness and Athletics Equity for Students with Disabilities Act, which requires schools to ensure that students with disabilities have equal access to physical education classes and athletics programs. "We need a law like Maryland's on the national level," said Mullins, a double-amputee who set Paralympic records in the 100-meter dash and long jump at the 1996 Paralympics. "Opportunity is the start of the possible. If opportunity is not there, how many will go down that path of pushing themselves in self-discovery?"
Schools in Maryland have three years to phase in compliance. The bill provides an exception when inclusion "presents an objective safety risk to the student or to others or fundamentally alters the nature" of mainstream phys ed classes or athletic programs. Other speakers included Charlie Huebner, chief of Paralympics for the U.S. Olympic Committee, and Steve Bobadilla, a recent graduate of John F. Kennedy High School in Silver Spring, Md. Bobadilla, who plays wheelchair tennis, was at one point too overcome with emotion to read his statement during the House briefing. "Education and perception are bigger obstacles than funding," Huebner said. When people are educated their perceptions change," he said, "and they find sports for the disabled is not only OK but something to be embraced and championed." Mullins said it is especially important that disabled students have access to phys ed classes: "We see what other Americans are facing with the obesity crisis. And if you have a disability, you are three times more likely to be obese." Terri Lakowski, public policy director of the Women's Sports Foundation, said what's needed next is a study by the Government Accountability Office to determine the state of scholastic participation opportunities for the disabled. "We are only at the starting point in the fight for a federal law," she said. "But we gained some traction today."
Amputee Support Groups There will be no meeting of the ASPIRE support group in August. The next ASPIRE support group meeting will be held on Wednesday September 24 at 6:15 pm at the Hospital for Special Surgery located at 535 East 70th Street, NY. For more information about the ASPIRE support group contact Charlie Steele at charlieatl@aol.com or (212) 877-7050 New York-Presbyterian Hospital
Amputee Education and Support Group
Every First Friday of the Month 9-11 AM Hoyt Board Room Children?s Hospital of New York
in Room 121, 3959 Broadway New York, NY 10032. (Enter on West 167th and Broadway at the glass Energy Court.) For further information and to RSVP, contact Annette Ward at 212-305-3964. The Long Island amputee support group meets the first Saturday of each month at South Side Hospital, 301 East Main Street in Bayshore. If you are interested in joining this group, contact Jodi Adler at 631-968-3330.
ASPIRE & Team A Step Ahead Fundraisers  | Several thousand dollars were raised to benefit programs for ASPIRE and Team A Step Ahead through Phil Kreuter's participation in the Newton's Revenge Mt. Washington Uphill Bike Race. Phil completed the race in 1 hour and 41 minutes. More information about the race can be found at: http://www.newtonsrevenge.com/. With a few weeks to go before heading to Death Valley to compete in the Badwater 135 mile Ultra-marathon, Dave Balsley was forced to postpone his participation in the race and this fundraising event until 2009. Donations to ASPIRE are still welcome and can be sent to ASPIRE, c/o GLIRC 101 Dupont Street Suite 24 Plainview NY 11803. | Phil Kreuter near the finish line at the
top of Mt. Washington. | |
Mobility Clinic Join Dave Balsley, P.T. and Phil Kreuter, P.T. at the Jericho High School track on Long Island for their monthly mobility clinic at 10 am on Sunday August 24. They will provide instruction in gait training and running techniques as well as advanced mobility skills. Dave and Phil have extensive experience working with amputees of all ages and activity levels. Come work out with world class athletes and learn from experienced coaches and physical therapists. The setting is relaxed and enjoyable. There is no pressure; come learn and see what you can do to improve yourself or just to watch. For more information and directions to the mobility clinic, call the office at 516-681-3484.
 On June 24th, Louisiana became the 11th state to pass a prosthetic parity law. It was a hard fight with many challenges along the way. House Bill 318 was amended to include a financial cap of $50,000 per limb, per year. The cap is a tough compromise to accept, but the campaign committee felt it was important to be open for negotiations to pass protections into law. The ACA is continuing its fight at the federal level. The Prosthetic Parity Act of 2008 (HR 5615) was introduced on March 13, 2008. The federal bill requires a consistent and appropriate standard for prosthetic care.
The bill was authored by Representative Robert Andrews (D-NJ), with Representatives George Miller (D-CA), Todd Platts (R-PA), Mario Diaz-Balart (R-FL), and Lincoln Diaz-Balart (R-FL) signing on as original co-sponsors. Since the introduction of this bill, the ACA held a very successful week of action where activists across the country organized events in support of the federal bill. Over 98 events were held in 89 different cities in 35 states. The ACA held a lobby day on June 11th bringing together activists from across the country to meet with their representatives and senators to push for support. On July 22nd, ACA staff and board members headed to Capitol Hill. The group had a total of ten meetings with staff in the offices of members of the House Committee for Education and Labor committee --- Representatives Tom Price (R-GA), John Kline (R-MN), David Davis (R-TN), Judy Biggert (R-IL), Randy Kuhl (R-NY), Ric Keller (R-FL), Cathy McMorris Rodgers (R-WA), Timothy Walberg (R-MI), Peter Hoekstra (R-MI), and Virginia Foxx (R-NC). These offices were specifically targeted, as the bill must first pass through the Education & Labor committee. The ACA is working to secure additional Republicans from this committee as co-sponsors as well as to build overall support for the bill. They are looking to set up Hill days each month to meet with every committee member and the House Leadership. They are also looking to activists to conduct meetings with their representatives in district offices. As a result of this as well as the continued activism of many ACA members, the number of co-sponsors has more than tripled. There are now 20 representatives sponsoring the federal parity bill. For more information on prosthetic parity legislation in your state, the federal legislation or information about other ACA programs and activities go to www.amputee-coalition.org/advocacy/index.html | 
