AMC TODAY Winter 2019 Volume 1, Edition 3 Finding his voice page 4 Symposium success page 9 Dr. Hall profile page 13 PAGE 2 AMC TODAY FALL / WINTER 2018 Mark Indreika, editor Doctors step up I was blessed to have a very gifted surgeon, increase the number of medical professionals who can Dr. Hampar Kelikian, work on me when I was young. work with AMCers. In addition to doctors, we need I credit the independence I have today with his skill. more trained therapists who can work to improve the Sadly, many people in my generation did not have a quality of our lives by helping more people achieve positive experience with the medical profession. Be- independence and their full potentials. cause of botched, and many times, needless surgeries As people with AMC we must advocate for our- performed by poorly skilled doctors, they suffer with selves and for those who come after us. While AMC chronic pain. Additionally, adults with AMC are still can have a negative impact, a diagnosis is not a trage- inhibited by the stereotypes that many doctors have dy: it is a challenge, a challenge for the individual, the about disabled people, especially when it comes to qual- medical community, and society in general. In addition ity of life issues. In recent years there have been many to educating people about our abilities and advocating advances in pediatric care for children with AMC, but for greater access, we need to insist that doctors work to unfortunately, many adults have been left behind, un- help us live the lives we were meant to live. able to get the care they need. Writer Valerie Pepe traveled to the symposium in This past September, however, the medical September, and she reflects on the meaning of her expe- field took a step in the right direction when doctors rience in this edition of AMC Today. This summer I inter- from across the world attended the Third Interna- viewed Dr. Judith Hall at the conference in Columbus: tional Symposium on Arthrogryposis in Philadelphia. you will find her profile on page 13. Finally, our cover It was an important event attended by people with story features Doug Moreau, the press box announcer AMC who shared their experiences with the medical for the New Orleans Saints. Doug has taken his love of community. Hopefully, events like the symposium will sports to places most fans only dream of going. AMC Today The official publication of AMCSI Edited by Mark Indreika Ileana Hernandez [email protected]. Cover Cover photo courtesy of Doug Moreau Design by Ileana Hernandez PAGE 3 AMC TODAY FALL / WINTER 2018 Doctor opens practice Hartwick named Dr. David Frumberg has opened his office to see AMCSI president adult patients with arthrogry- posis. He specializes in pedi- Back in August, Lana Prater announced atric orthopedics, limb length- her decision to resign as the president of AMCSI ening, reconstructive surgery, due to personal reasons. We thank her greatly for and orthopedic surgery. His her service and time as former secretary and pres- office is based in Connecticut. ident of AMCSI. Best wishes! If you would like to make an Chris Hartwick agreed to and was voted on appointment to see him, here by the board of directors to step in and assume the is his information: role as the president of AMCSI. Chris is an adult AMCer from South Carolina Dr. David Frumberg who has been on the board of directors since 2012. Pediatric/Adult Ortho He has served as member-at-large, parliamentarian, Yale University and most recently, vice president. He was first intro- 47 College Street, Room 221 duced to AMCSI when former president, Theresa New Haven, CT 06510 Lucas, contacted him through email after finding his 203.785.2579 information on a website. They were able to meet up with Ani Samargian, where they discussed going to the 2008 Ohio conference. Miss giving on Tuesday? For Chris, the experience was quite surre- Even though Giving Tuesday has come and al. “Up to that point, I had only met three others gone, it’s not too late to help AMCSI. Help us reach with arthrogryposis. Going to that conference was our goal of $10,000. Your financial gifts help us life-changing.” It was a “wow” moment for him. His with several projects like our annual conferences, love for the AMC community has grown every year. grants, mini meet ups, bereavement funds, and so “I will do my best to be of service to the AMC many other needs. Thank you for your continued community. I thank my fellow board members for support in helping us raise awareness of arthrogry- having faith in me and voting me in as president posis. of AMCSI. I am lucky to have such a great group of people to work with making this transition pos- sible. What a great team of individuals we have Members needed now to work with and advocate for the arthrogrypo- sis community. I can’t wait to see what our future This year AMCSI started its membership holds.” drive on December 1. In the past it has started in For the past six years Chris has worked January. as a graphic designer for a small university. He is What? No way! Oh yes. Be the first to sign also a founding member of a local art gallery since up to get a discount and early bird access to our an- 2007. Chris enjoys cooking, Legos, reading, and nual conference as well as other membership perks. swimming. Membership starts as low as $10 per person. Talking up a storm When Michael Koenen, punter for the struction project in the wake of hurricane Ka- Atlanta Falcons, set up to receive the snap 90 trina, Doug wasn’t there to celebrate, he was seconds into the game against the New Orle- there to work; although he admitted feeling ans Saints, Doug Moreau, sitting inside the “goose bumps.” Superdome pressbox, focused intently on the Then, when Steve Gleason, safety for the play below. Unlike most people watching the Saints, broke through the line of red jerseys with Monday Night Football matchup in September his arms raised to block Koenen’s punt, Doug of 2006, the first game after a year-long recon- knew he was witnessing something special. “He said he learned the value of patience and en- durance by dealing with his AMC, and this helped him get through the storm’s aftermath. Four years after the storm his new home was finally finished.” Doug Moreau has worked as the press box announcer for the New Orleans Saints since 1998. photo courtesy of Doug Moreau This scene might not have cause of the storm. At first Doug, Orleans Saints in 1998. seemed possible to him one year who teaches sixth and seventh grade Several hundred media earlier when he returned home two literature as his full-time job, wasn’t people cover each home game, weeks after the storm to find his sure where and when his school and Doug provides them with re- house covered in wet sheetrock; would reopen. He also had to file suit al-time information. There are sev- the roof was gone, and the ceil- against his insurance company who en to eight people in the press box ing had collapsed. Doug, who has denied his claim. They asserted that who just deal with statistics, and AMC, knew at that moment that all of the damage to his home was Doug is connected on headset with his home was gone. He went to a caused by rising water even though the head of the stat team. He is also kitchen cabinet, took out a bottle this was clearly not the case. Even- connected with a spotter who helps and had a drink. Before his home tually, after he provided video proof him identify the players involved in was finally rebuilt, he lived in sev- that his home was not flooded, they each play. Inside the press box, he en different places, including two agreed to pay. “They didn’t realize announces the full details of every years in a FEMA trailer. who they were fighting against.” play and gives injury updates. Ironically, he did not want He said he learned the value In addition to working for to leave his home before the storm, of patience and endurance by deal- the Saints, Doug spent 13 sea- but his mom, Joan, convinced him ing with his AMC, and this helped sons as the stadium announcer to go. After packing up his small, him get through the storm’s after- for the New Orleans Zephyrs, a teardrop trailer, he evacuated with math. Four years after the storm his minor-league baseball team. Addi- her and four dogs to a campground new home was finally finished. tionally he has worked as a sports in northern Louisiana. information director at the at He said for a long time there Doug began working as the the University of Southwestern was a great deal of uncertainty be- press box announcer for the New Louisiana (now Louisiana at La- PAGE 6 AMC TODAY FALL / WINTER 2018 fayatte). He completed his undergraduate com- munications degree from the University of New Orleans where he was sports announcer from 1986-88. Later in life he earned his teaching certif- icate and currently teach- es at the all-boys campus of a co-ed Catholic school in New Orleans. Working in sports helped normalize his life and distract him from his struggles caused by the hurricane. In Katrina’s aftermath he still covered the Saints games relo- cated to Louisiana State University’s stadium.