PWSA (USA) & IPWSO

1. Advocacy Across the Boarders PWSA (USA) & IPWSO Janalee Heinemann ~ Director of Research & Medical Affairs Prader-Willi Syndrome Assoc. (USA) & IPWSO Vice President

2. For International Research Collaboration Meet Basic Needs First

3. 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

4. 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

5. IPWSO WORLD IPWSO 100 Member Countries Worldwide ALL STARTED WITH ONE PROFESIONAL DELEGATE & ONE PARENT DELEGATE

6. 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 IPWSO

7. 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. IPWSO

8. 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. IPWSO

9. 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

10. We must give them more than hope for tomorrow (research)– we must give them help for today (support)

11. Free Diagnosis Service Genetic 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 difference

12. Research • Therapy and treatment projects • Study of population • Basic research BIRD Foundation Europe Onlus Molecular diagnostic Rehabilitation Clinical Centre • Molecular genetic • Cytogenetic • Physiotherapy • Plurispecialistic medical examinations • Ecography

13. Sharing Educational materials 90,000 Packets Printed in 2003 Containing PWS Education Material 10,000 Packets Printed in English & Spanish 30,000General Awarenessfor Parents 30,000Medical Awarenessfor Doctors 30,000Crisisfor Professionals Only IPWSO

14. PWSA (USA) MEDICAL ALERTBOOKLET SHARED WORLDWIDE THROUGH IPWSO English Greek Spanish IPWSO

15. IPWSO MEDICAL ALERTSBOOKLET Croatian Russian Rumanian IPWSO

16. MEDICAL ALERTBOOKLET = LIVES SAVED AROUND THE WORLD Turkish Latvian Estonian IPWSO

17. MEDICAL ALERTBOOKLET = LIVES SAVED AROUND THE WORLD Italian Swedish Japanese IPWSO

18. MEDICAL ALERTBOOKLET = LIVES SAVED AROUND THE WORLD Arabic Chinese IPWSO

19. Global Awareness Exhibits at Medical Conferences IPWSO

20. Global Awareness 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 (Scotland 2012: ESPE in Leipzig (Germany) Exhibit at Medical Conferences IPWSO

21. Appreciating other cultures is essential China Taiwan

22. 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.

23. If only the rest of the world could understand our common humanity Boy with pws from japan Ann & Mom from Iran

24. 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.

25. 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.”

26. All of our children deserve to live Samia Erin Leslie "Those whom we lose in the springtime of their lives we shall meet again where there is no winter."

27. 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

28. “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