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

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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

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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.

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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.

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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

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PWSA (USA) MEDICAL ALERTBOOKLET SHARED WORLDWIDE

THROUGH IPWSO

English

Greek

Spanish

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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