advocacy across the boarders janalee heinemann ~ director of research & medical affairs...
TRANSCRIPT
Advocacy Across the Boarders
Janalee Heinemann ~ Director of Research & Medical Affairs Prader-Willi Syndrome Assoc. (USA) & IPWSO Vice President
PWSA (USA) & IPWSO
For International Research Collaboration Meet Basic Needs First
From our international Prader-Willi syndrome theme song
• “Across the world’s oceans, across the world’s skies
• We join hands together and love makes us fly.”
Giorgio Fornasier
Being able to connect daily via the internet is the key to collaboration Board Skype calls:•USA – east & west coast•New Zealand•Italy•Romania•India•Chile•Germany •Finland•UK•Australia
A committee from all over the world to put on A conference in taiwan
IPWSO WORLD
100 Member Countries Worldwide
ALL STARTED WITH ONE PROFESIONAL DELEGATE & ONE PARENT DELEGATE
IPWSOIPWSO
Member Countries
• Europe (38) Albania, Austria, Belarus, Belgium, Bosnia
Herzegovina, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Georgia, Germany, Greece, Hungary, Iceland, Ireland, Italy, Kosovo, Latvia, Lithuania, Macedonia, Malta, Moldavia, Netherlands, Norway, Poland, Portugal, Romania, Russia Federation, Slovakia, Slovenia, Spain, Sweden, Switzerland, Ukraine, United Kingdom
• North America (5) Canada, , Jamaica, Mexico, Puerto Rico, USA
IPWSOIPWSO
Member Countries
• Central America (8)
Costa Rica, Cuba, Dominican Republic, El Salvador, Guatemala, Honduras, Nicaragua, Panama.
• South America (10)
Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, Paraguay, Perù, Uruguay, Venezuela.
IPWSOIPWSO
Member Countries• Middle East & Africa (21) Algeria, Armenia, Bahrain, Egypt, Iran, Israel,
Jordan, Kenya, Lebanon, Libya, Morocco, Palestine Territory, Nigeria, Qatar, Saudi Arabia, South Africa, Sultanate of Oman, Tunisia, Turkey, Uganda, Yemen
• Australia & Asia (18) Australia, Bangladesh, China, Hong Kong, India,
Indonesia, Japan, Kazakistan, Malaysia, New Zealand, Pakistan, Philippines, Singapore, South Korea, Taiwan, Thailand, Uzbekistan, Vietnam.
IPWSOIPWSO
It just takes one parent or one professional with a heart – and some come all in one package
• It was amazing to realise that 3 years ago there was almost no knowledge about PWS in Cuba and now we had 63 people attending the workshop.
• Looking at the audience, you could not distinguish who were parents and who were professionals. They all participated by heart, laughed and cried together. Dr. Loisel’s daughter
after 3 yrs GHT
We must give them more than hope for tomorrow (research)– we must give them help for today (support)
Free Diagnosis ServiceFree Diagnosis ServiceGenetic Molecular Laboratory at BIRD
IPWSO in co-operation with BIRD Provides free diagnosis in countries where testing is not available
Since 2003 over 420 diagnosis made in 36 different countries:Algeria, Armenia, Bulgaria, China, Colombia, Costa Rica, Croatia, Cuba,
Domenican Republic, Georgia, Guatemala, India, Iran, Jordan, Kenya, Latvia, Malaysia, Mexico, Morocco, Nicaragua, Pakistan, Paraguay, Peru, Philippines,
Romania, Serbia, Slovakia, Slovenia, Venezuela, Vietnam, Yemen, etc.
IPWSO making a world of a differenceIPWSO making a world of a difference
BIRD Foundation Europe Onlus
Molecular diagnostic Rehabilitation
• Molecular genetic
• Cytogenetic
• Physiotherapy
Clinical Centre
• Plurispecialistic medical examinations
• Ecography
Research
• Therapy and treatment projects
• Study of population
• Basic research
Sharing Educational materials
90,000 Packets Printed in 2003Containing PWS Education Material
10,000 Packets Printed in English & Spanish
30,000General Awareness
for Parents
30,000Crisis
for Professionals Only
30,000Medical Awareness
for Doctors
IPWSOIPWSO
IPWSOIPWSO
PWSA (USA) MEDICAL ALERTBOOKLET SHARED WORLDWIDE
THROUGH IPWSO
English
Greek
Spanish
IPWSOIPWSO
IPWSO MEDICAL ALERTSBOOKLET
Croatian
Russian
Rumanian
IPWSOIPWSO
MEDICAL ALERTBOOKLET = LIVES SAVED AROUND
THE WORLD
Turkish
Estonian
Latvian
IPWSOIPWSO
MEDICAL ALERTBOOKLET = LIVES SAVED AROUND
THE WORLD
Italian
JapaneseSwedish
IPWSOIPWSO
MEDICAL ALERTBOOKLET = LIVES SAVED AROUND
THE WORLD
Arabic Chinese
Global Awareness
IPWSOIPWSOExhibits at Medical Conferences
Global Awareness
IPWSOIPWSO
Exhibit at Medical Conferences
2004: ESPE in Basel (Switzerland)2005: ESPE in Lyon (France)2006: SLEP in Buenos Aires (Argentina)2006: ESPE in Rotterdam (Netherlands)2006: APPES in Pattaya (Thailand)2007: SLEP in Santiago (Chile)2007: ESPE in Helsinki (Finland)2008: APPES in Mumbai (india)2008: ESPE in IstambuL (Turkey)2009: APPES in Bangalore (India)2009: LWPES/ESPE in New York (USA)2010: ESPE in Prague (Czech Republic)2011: ESPE in Glasgow (Scotland2012: ESPE in Leipzig (Germany)
Appreciating other cultures is essential
China Taiwan
Supportive Living for Adults with PWS is an Example
• We have supported 3 conferences for professional care providers – yet of our 98 member countries, only 13 have the option of supportive living & 10 respite centers -- some due to culture and others due to lack of government support
• We have started a committee called 'FAMCARE' to work on support for the adult with PWS living at home.
If only the rest of the world could understand our common humanity
Ann & Mom from Iran Boy with pws from japan
Dr. Mohamed Khalaf ~ A New PWS Parent in Egypt
I really want to do whatever I can to help those people with PWS. I want to be like you and all the volunteers of PWSA. This is how we will be rewarded from our Dear Lord not just because I carry my ID with moslem, christian or jewish religion......etc. I did and still do alot of charity work in my hospital and I am always in a better mood and more happy when I am doing surgeries for non paid patients than the paid ones. You know why? Because those who are able to pay are capable of seeking medical treatment anywhere but those who are unable to pay have only me to help.
Some find us too late ~ Sultan from Kazakhstan died at age 18
“We will always treasure Sultan in our lives. His last moments are very special to us and we only share these with close friends and family. We thought of writing this to you because you have become such family to us. Again many thanks to you all. “
•Kairat (Sultan’s uncle and an older brother of Askar)
“His last words were the words of Lord’s prayer which he knew by heart. He tried to say it two times but was too weak and could not finish. He then gathered all his strength and said this prayer in full once and then another two times. He was breathing for a few more minutes before going completely quite and loosing heart beat.”
All of our children deserve to live
"Those whom we lose in the springtime of their lives we shall meet again where there is no winter."
Samia
Erin
Leslie
In the world of rare disorders, collaboration is more than good business ~ it is often a
matter of life or death
All have PWS – All had early intervention
“Across the World’s Oceans Love Makes Us Fly High!”• Sharing educational
materials
• Sharing research
• Sharing email support groups
• Sharing support for crises
• Sharing conferences
"Never doubt that a small group of thoughtful,
committed citizens can change the world;
indeed, it is the only thing that ever has." Margaret Mead