Tay-Sachs Family Medical Conference in San Diego 2013

I hope you are all doing well. I know everyone has been very busy especially after the holidays with catching up with work, family, responsibilities and all. 2013 so far has been great. Anyway I just wanted to let you all know that the Tay-Sachs Family Medical Conference will be held in San Diego for the very first time. Traditionally, these conferences are usually held in the East Coast so we are very fortunate that it will be held in our “backyard.” Bong (Ferd) and I wanted to invite you to attend the conference and see what it is like to be surrounded by families like us. The conference is designed to give support, education, research update, hope, respite and relaxation for the families with TSD. I will warn you that this may be a very emotional experience, but at the same time, it is an opportunity to show support, renew, and re-evaluate the true meaning of strength, hope and life. The conference will be held from April 4-7, 2013 (Friday and Saturday will be the major days of the conference) and will be held at the Mission Valley Marriot Hotel. If you only plan to attend sessions with no meals, the conference is free so let me know if you are interested. You do not need to attend the entire conference at all and may attend any session or hour of interest if you wish. We also need volunteers to help out in many ways (including reliable and trustworthy high school students) to help volunteer with activities for the healthy siblings and earn community service hours. If you are interested in volunteering one way or another, let me know or you can contact, Kim Kubilus, Director of Family Services with NTSAD at 1-800-906-8723 or email at kim@ntsad.org If you would like more information about the conference and get an idea of the itinerary schedule and program, please click on the following link:http://www.ntsad.org/index.php/general-information Please do not feel obligated by any means. As our family and friend, we just wanted to extend an invitation to you all to see what it is like in Gavin’s world. Gavin by the way continues to do fantastic. We are very blessed by God as HE continues to give us strength to help Gavin thrive. His pulmonologist was very astonished to see him last Monday doing so well given that the winter was very good to him compared to last winter when Gavin had frequent ER visits. Our proactive approach to alternative medicine and holistic therapy (Faith healing massage, acupuncture, chiropractic care, and cranial sacral therapy that are all done every week) in addition to his conventional medications, therapies and doctor visits, have all really helped Gavin so much. Anyway, take care and thanks for taking the time to read.

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