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[disAbility Resources Main Page]
Current Threats to Ventilator Users International Ventilator Users Network is urgently concerned about these developments, and seeks your support for a resolution developed by its Consumer Advisory Committee. The resolution, Current Threats to Ventilator Users in Cost-Cutting Proposals From Medicaid and Other Medical Insurance, is online at www.post-polio.org/IVUN Please sign it by completing the form online, giving your full name (with advanced degrees if appropriate) and affiliation.
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An organization called the International Ventilator Users Network (IVUN) exists to link ventilator users with each other and with health care professionals interested in home mechanical ventilation.The IVUN puts out a newsletter four times a year, and can be contacted at 4207 Lindell Blvd., #110, St. Louis MO 63108-2915 (314-534-0475, or FAX 314-534-5070). ventinfo@post-polio.org
2007 Resource Directory for Ventilator-Assisted Living is a networking tool for health professionals and both long-term and new ventilator users.
Listings include:
| I am the medical director of the Double H Ranch, a Hole in the Wall Camp for children with serious illnesses. In our camp in Lake Luzerne, NY, we serve almost a thousand children each summer with conditions that might otherwise prevent them from attending camp: sickle cell anemia, cancer, hemophilia, spina bifida, and other neuromuscular disorders, etc. For the last 3 years, we have offered a separate session for families of children who are ventilator dependent. This year, "Camp Inspiration" will run from June 13-17. We can accommodate a dozen families, including parents, siblings and the ventilator dependent child. We usually take kids from 6-16 in most sessions, but we take kids from 6-18 for the vent. session. The families will enjoy swimming, camp fires, wagon rides, arts and crafts, nature programs, etc. We will "pamper" the parents, and give everyone a chance to meet and communicate with other families who are dealing with a ventilator dependent child. As with all our programs, the session is free. To find out more about Double H, please go to our web site, http://DoubleHranch.org . To obtain an application, please contact Tara, our admissions coordinator, at (518) 656-9676, or email her at theranch@doublehranch.org. For any medical questions, I can be reached at ktbraico@aol.com (please put "camp inspiration" in the subject heading). We would appreciate it if you would inform your readership of this opportunity! Sincerely, Kathleen Braico, MD Double H Ranch |
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Document: http://www.makoa.org/vent/index.html
Last Modified: Monday, 21-May-2007 17:54:52 MST