The Madrina Fashion Show • A 6 continent fashion show, challenging the top fashion students from fashion schools around the world, to create wardrobes and items that counter the hypersensitivity (allodynia) of Complex Regional Pain Syndrome (CRPS). *Other CRPS symptoms such as edema (swelling), excessive sweating, and temperature changes will also be included. However, the primary fashion design focus will be on hypersensitivity (allodynia).
Imagine? Imagine every time you put on clothes, it felt as if an iron was pressing up against your skin? *Sadly, you would not have to imagine this if you had CRPS.
Complex Regional Pain Syndrome • Complex Regional Pain Syndrome (CRPS) formerly known as and still commonly referred to as Reflex Sympathetic Dystrophy (RSD), is the world’s most painful disease according to the McGill Pain Index. • CRPS is when your body’s central nervous system is constantly misfiring pain signals to the brain that your body is in extreme pain, when in actuality it is not. • It is not only incurable, but lacks any effective treatment, thus giving it the nickname of the “Suicide Disease”. Nearly 1 in 6 take their own life. • The disease leaves people in 24/7 EXCRUCIATING pain with no relief. Cannot be emphasized enough just how UNBEARABLE the pain of CRPS is. There is no pain worse than CRPS. The pain is higher than amputation according to the McGill Pain Scale and this is a CONSTANT pain. • Is often misdiagnosed, as it takes an average of seeing 5 different doctors before being properly diagnosed, despite early diagnosis being critical. *A short 5 minute video providing great insight into what CRPS is like. http://www.youtube.com/watch?v=Zo-xQLigqDo
The Madrina Challenge Hypersensitivity Fashion Design + Dr. Elliot Krane using a blowtorch to describe the feeling of clothing touching the skin among those with hypersensitivity (allodynia) in his TED talk. http://www.youtube.com/watch?v=J6--CMhcCfQ
Format • 18 fashion design students from each continent, will each design 4 daywear (more casual) item and 1 nightwear (more formal) item. • Each designer will also be required to make a 5 minute video using a smartphone camera, to talk about their thought process of creating the wardrobes and what they learned about the disease. • The winner(s) will get to design the initial Madrina collection.
Why A Fashion Show? • Because 85% of CRPS sufferers are women and it is a demographic that cares a tremendous amount about their appearance and wardrobe. This event can help reassure them that beauty is not lost with the disease. • Because nobody deserves a fashion show more than people who cannot wear clothes without being in excruciating pain. 82% of people with CRPS suffer from hypersensitivity (allodynia). The slightest touch of fabric touching the skin causes extreme pain. • Because 78% of those with CRPS suffer from depression, 50% have suicide ideations, and 15% take their own life, giving it the highest suicide rate of any other disease. What they wear, how they look, and how they feel about themselves contributes to that depression. A fashion show will help combat that. *Statistics taken from 2009 RSDSA study http://tinyurl.com/qgv8mkl
Benefitting • Portion of the proceeds go to the Nerve Injury Lab http://tinyurl.com/lkul6nf at Massachusetts General Hospital • Hospital is ranked 2nd among all hospitals in the U.S. http://tinyurl.com/nkn7qw5 • Is the teaching hospital of Harvard University
Location Broad Street Ballroom 41 Broad Street NY, NY 10004 646-624-2524 http://www.broadstreetballroom.com/ Floor Plan: http://www.broadstreetballroom.com/pdf/FloorPlan.pdf
Goals • To raise funds for CRPS research and clinical trials in finding a cure and better treatments. • To increase CRPS awareness on a global scale, by challenging the top fashion students from fashion schools all over the world, to create wardrobes and items that counter the hypersensitivity (allodynia) of CRPS, while changing how the world thinks about clothing. • To provide a unifying, flagship, signature fundraising event to strengthen the global CRPS community and encourage more global collaboration among CRPS sufferers, organizations, and researchers.
Event Details • Date: Saturday, June 28th 2014 • Time: 7pm-11pm • Tickets: $100 • Event Description: Emerging fashion designers from top fashion schools around the world, are challenged to create wardrobes and items that counter the hypersensitivity of Complex Regional Pain Syndrome. • Portion of proceeds go to benefit the Nerve Injury Lab at Massachusetts General Hospital.
주최 경위 • 미국의 사업가가 자신의 대모(Madrina)가희귀성 난치 질환인 CRPS로 투병 중 사망하자 그 계기로 자선 패션쇼를 기획 • 고통이 심해 의복 착용이 거의 불가능한 CRPS 증상에 대해 알리고 이를 위한 의복을 제작하기 위함 • 우승자를 뽑아 실제 의복 생산 및 추후 런칭 하는 패션 브랜드에 글로벌 직원을 선발하기 위함
선발된 학생이 해야 할 일 • 5개 의복 제작 후 미국 주소로 송부 * 주소 추후 공지, 제작 및 송부 본인부담 - 오렌지색 의류 (오렌지색:CRPS상징색, 남녀공용) - 여성웨어(1Casual, 1Formal) - 남성웨어 - 파자마 (남녀공용) • 자기소개와 옷을 설명한 5분 내외의 영상 - 패션쇼 (2014.6.28) 중 상영 예정, 휴대폰 촬영 가능 - 영어가 미숙할 경우영어 자막 처리 가능
참여 의의 • 뉴욕 월스트리트에서 열리는 자선 패션쇼에 한국 대표로 참가 • 1등으로 선발될 경우 3,000달러 가량의 상금 (액수 조정 가능) • 우승하지 않더라도 재능있는 학생들 대상으로 향후 Madrina패션 브랜드 런칭시 신입 직원으로 일할 기회 부여 (2014.fall 런칭 예정) • 전 세계적으로 유일하게 CRPS 증상을 위한 패션쇼 개최 (옷을 입는 고통이 큰 환자들에게 입을 수 있는 옷을 제작) • 향후 미국 전역으로 본 패션쇼를 확대할 예정이며 꾸준한 co-work 가능
참고 정보 • 공식페이지 http://madrinafashionshow.com • 페이스북https://www.facebook.com/pages/Madrina-Fashion-Show/157726787757512 • 트위터https://twitter.com/MadrinaFashion • 미국CRPS환우회 환우를 대상으로 한 설문 조사 (Password: madrina) https://www.surveymonkey.com/sr_pass.aspx?sm=Gbw5hsuyQ7BG8ANTP4NDQF%2bILW9HDUdjfbV9oSJmMuo%3d • CRPS 증상 소개 (영문) http://www.rsds.org/pdfsall/SharmaA_AgarwalS_BroatchJ.pdf