HOME/GARDEN SHOW: The 10th annual fall Home & Garden Show is from 2 to 7 p.m. Friday, 10 a.m. to 7 p.m. Saturday and 11 a.m. to 7 p.m. Sunday at the American Bank Center Convention Center. The show features more than 100 of the Coastal Bend’s premier companies displaying the latest products and services for area homeowners, educational seminars and gardening tips. Cost: $5/adults; $3/seniors, military; free/ages 18 and younger. Free admission today for seniors/military. Information: 882-2071. Also there will be a booth for the non-profit organization 1p36 Deletion Support and Awareness Group selling raffle tickets for $5 to raise funds for the newly formed organization. Information: 361-658-9799 or 361-438-4975.
Our very first 1p36 fundraiser is officially over! We had our raffle drawing done on Saturday Oct 2nd and the lucky winner is Jared Newson from Corpus Christi Texas. The grand prize consisted of 2300 dollars worth of wonderful prizes and giftcards which were donated from local businesses within our community. We ended up raising $3,000 dollars and increased 1p36 awareness along the way...not bad for pulling this off in 3 weeks prior to our main event, the Home Garden Expo 2009! Our main goal from the start was met which was to bring public awareness to our community. The Home Garden expo was an excellent opportunity for just that...we passed out over 1500 handouts and business cards and sold over 400 raffle tickets in three days. I think we did pretty good considering that only 2,000 people showed up at the Home Garden show. Unfortunately it was a slow event but overall we had a great turnout at our booth. Everyone was very curious and asked many questions which I loved answering. It was great talking and connecting with complete strangers. If we could make a difference in one person's life then all of our efforts with this fundraiser was well worth it!
Our very first 1p36 fundraiser is officially over! We had our raffle drawing done on Saturday Oct 2nd and the lucky winner is Jared Newson from Corpus Christi Texas. The grand prize consisted of 2300 dollars worth of wonderful prizes and giftcards which were donated from local businesses within our community. We ended up raising $3,000 dollars and increased 1p36 awareness along the way...not bad for pulling this off in 3 weeks prior to our main event, the Home Garden Expo 2009! Our main goal from the start was met which was to bring public awareness to our community. The Home Garden expo was an excellent opportunity for just that...we passed out over 1500 handouts and business cards and sold over 400 raffle tickets in three days. I think we did pretty good considering that only 2,000 people showed up at the Home Garden show. Unfortunately it was a slow event but overall we had a great turnout at our booth. Everyone was very curious and asked many questions which I loved answering. It was great talking and connecting with complete strangers. If we could make a difference in one person's life then all of our efforts with this fundraiser was well worth it!
We would like to thank each and every single person and sponsors who donated or bought raffle tickets to help with our 1p36 DSA nonprofit organization. None of this would have been possible without you and we are honored and humbled by your support of our cause to raise much needed awareness of 1p36. We'd also like to thank our family and friends for donating their time to help us setup and man the booth at the Home Garden show and the countless time to sell raffle tickets. Special thanks to Phoenix and our 1p36 board of trustees, we really appreciate all of your support and shipping business cards and brochures at the last minute. Thanks for the fast response! Your support means the world to us and the proceeds from the raffle will be going towards education, research, and support of our 1p36 families.
My 23 year old daughter just received the diagnosis of 1p36 deletion TODAY! She's had a clinical diagnosis of Angelman Syndrome most of her life. I am so excited and I want to get connected with all the families who share this blessing. My biggest question is about sleep or lack of. How many 1p36 deletion kids have severe sleep problems. That's just the start of my questions and I have bunches to share...as my gal is a lady now and we can help support young families with ideas.
ReplyDeleteKathy and Nelly, 23 1p36 deletion
you can come join us at http://health.groups.yahoo.com and search for 1p36 deletion syndrome. We also have a new website at www.1p36dsa.org I am so glad that you have a diagnosis. We in the group would love to help in any way we can and I am sure you can teach us a lot since you daughter is one of the older kids in the group. To give a short answere to your question, yes, many kids with 1p36 deletion syndrome have sleep issues.
ReplyDeleteKen
Dad of Joseph 3 1/2 1p36
Kathy,
ReplyDeleteI'm so glad your daughter finally got her correct diagnosis. It blows my mind how many children out there are still misdiagnosed or without any diagnosis. We were lucky that my daughter Kaylee received her diagnosis. Our neurologist ordered a standard high resolution chromosome study. Luckily, she sent it off to Houston and they knew exactly what to look for considering they conducted the first and only research on 1p36. Someone was looking after us, so I feel blessed to know. So, I made a point to emphasize at the home garden show the importance of Microarray or FISH chromosome testings hoping to help other families get their diagnosis too. Welcome to our 1p36 family! Please join us the yahoo support group. Love to hear more about you and your daughter. God bless!
Sherry Culvahouse (mom to Kaylee 14mo/1p36 & Allison 5 yrs)
Hello,-- I just read the earlier post from Kathy, I believe, that her 23 year old was just diagnosed. We were also told Angelman's was our "most likely" diagnosis for our son Ryan. We finally got positive 1p36 deletion results from microarray when he was 4 a little over a year ago. (I have a feeling statistics on the frequency of this disorder are going to go way up as more people have this test done.)
ReplyDeleteThank you for the blog-- sharing knowledge and experiences is our most powerful tool, I think. --Jenny