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- 1. I may not speak but I have much to say
- 4. Angelman Syndrome (AS) is a neuro-genetic disorder that occurs 1 in 15,000 live births.
- 5. AS symptoms include: ? developmental delay ? lack of speech ? seizures ? walking and balance disorders.
- 6. AS is often misdiagnosed as cerebral palsy or autism. In Argentina, only 15% of AS cases have been correctly diagnosed. Individuals with AS will require life-long care.
- 7. To fill the void, a group of parents founded in 1999, Argentina?s Angelman Syndrome Parents Association, the only Latin-American organization.
- 8. In 2008, Judaica Foundation gives APSA a house in Tigre, Buenos Aires, for all their activities: Casa Angelman
- 10. To date, this association groups 120 children, most of who do not live in Buenos Aires.
- 12. OUR OBJECTIVES
- 13. To provide a space for emotional support, exchange and counseling for AS families.
- 15. To set up an AS reference center for professionals.
- 17. To establish a therapeutic and training center, including the organization of workshops, courses and meetings. To provide awareness and information to the medical community.
- 19. To promote the inclusion of people with Angelman Syndrome in the community, to facilitate access to education, health and work, with mutual enrichment.
- 21. A place of recreation
- 23. To provide equal opportunities to treatments for AS families, by facilitating access to therapies, drugs and legal coverage, in particular focusing on families who live outside of Buenos Aires and/or are in financial in need.
- 26. Intensive Therapeutic Program (P.I.T.)
- 27. A three-day Intensive Program where the child is approached with interdisciplinary therapies. We provide housing for children and their families who live outside of B.A. and need to travel to receive treatments not available in their place of residence.
- 29. We also receive the child¡¯s caregivers for specialized therapeutic training. We coordinate consultations with Dr. Menzano, Neurologist, for concerns and doubts that may arise in relation to studies and medications.
- 33. Occupational and Sensory Treatment with dogs is an activity open to all the community, not only children with AS, which is provided seven days a week.
- 36. We open the House to other organizations for social, cultural and spiritual initiatives. The house represents a place where values can be crystallized, skills enhanced and service to others implemented, a model of inclusiveness and solidarity.
- 39. A place of recreation, meeting, celebration and solidarity that encompasses the entire community.
- 40. NETWORKING
- 41. FUND. JUDAICA, supports Casa Angelman helping providing us with space and housing. AEDIN (Association in Defence for Neurological Infant) provides Casa Angelman with the team of professionals working in the therapeutic center. IDEL: exchanging experience. ART OF LIVING FOUNDATION: an educational and humanitarian NGO engaged in stress-management and service initiatives. Casa Angelman serves as site to organize courses and workshops.
- 42. Enrique Menzano, Pediatric Neurologist, Sub-Director of the Pediatric Neurology Department at the UBA, Chief of Neurology at the Maternal Pediatric Hospital of San Isidro. Professional advisor who has been traveling and training in several AS scientific symposiums. Graciana Diez Roux Ph.D. Chief Scientific Officer at Telethon Institute of Genetics and Medicine (TIGEM), Italy. Helps updating Casa Angelman with the latest scientific discoveries concerning AS. Carlos A. Bacino, M.D. Chief, Genetics Service, Texas Children's Hospital. Supports Casa Angelman by genetic counseling in those cases that have an unconfirmed diagnoses of AS.
- 43. FUNDRAISING
- 45. Annual membership fee. Individuals who contribute with a monthly donation. Companies that sponsor fundraising events.
- 47. EL PLACARD DE LOS ANGELES a ¡®thrift shop¡± event organized three times a year.
- 49. Community activities organized in the House with an entrance fee.
- 51. Institutional events held at the Museum of Latin American Art in Buenos Aires (MALBA) 2005, 2007 and 2009
- 53. The events organized by Casa Angelman are not limited to fundraising but also encourage volunteering and spread the word of the work being done at the House for AS families and the community.
- 54. Love is my language