Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Sara, How much ya wanna bet " she " ran out and bought the book too!!!? LOL you go girl! Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2000 Report Share Posted July 4, 2000 Thanks for all of the replies about my sis-in-law. I realize that it's really my problem that it bothers me and that bothers me! But....it does bother me less than it ever has before so that's progress (not perfection) - right?!? :-) Sara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2002 Report Share Posted October 7, 2002 Hi Everyone, I have had several people e-mail and asked to be updated on the reunion, so here it goes. The reunion was a huge success. We had twenty-four people attend and some came as far as the West Coast. We had an honored visit from Dr. Sharma, the GAO (General Accounting Office for Congress). Dr Sharma thanked everyone involved in this issue for all the hard work and congratulated us on our success. He also revealed that a new report on their findings would be coming out soon. The event accomplished many things, to include a 5 hour group discussion. We were also honored to have Dr. Bart Classen join the AVN, along side our hero, Dr. Nass for scientific board members. We had a reporter from an Austrian news agency that interviewed us for 4 hours and was so taken by the issue, she is requesting a one hour show to be dedicated to the anthrax vaccine controversy. This broadcast has an audience of 7 million around the globe. I would like to publicly thank Bridgett and Buck for their generous donation to help cover the cost of food. We had plenty and everyone enjoyed the meals. I would also like to thank Kirt and Venus Love for their attendance and knowledge. We look forward to a relationship with his organization. Hats off to Kathy Hubbel and Rugo for traveling so far. This reunion energized everyone, we are already planning the next reunion and we thought about somewhere in the mid section of the Country. Keep the faith! Roxane Bates Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Rick ~ That is so cool. It would be great to have a gathering of all the kids that have *grown up* together - just to see where they all are (life-wise) and see if they still relate to each other as well as in the past.... Congratulations! A great bunch of successful kids! -- Kathy mom to (19-DS) *********** REPLY SEPARATOR *********** On 6/27/2004 at 9:30 PM Rick Dill opined: | Today was Kingsley's 30th Birthday and Jan and I went to the | party. It was a wonderful reunion for many of our kids and even more | wonderful to see them as adults. They haven't seen Jan for five years, | but she was welcomed back. | | Lets see there was of course, and Mitch who has moved back from | Ohio where he spent nearly a decade. Then there was Colleen, , | Ellen,, Kim, and and also 's new house mates who I | didn't manage to meet. These kids got to know each other 17 years ago | when was 13 and his Mom started the Downs Teens Parties, which | were a monthly gathering with the kids in one part of the house and the | parents in another, much like today. The parties continue, but they | evolved into teens and young adults gatherings. | | So the youngest of today's crowd is about 25. Some like Kim, Colleen, | and Jan are thin like they were at 13 (although Jan has been way and way | down in the process). Everyone I talked to had moved out from home, | either into a group home, or in the case of Jan and Mitch into their own | place except for Amy who is still with her Mom for a while. | | These kids are the product of being allowed an education and of | supportive parents. What a neat bunch and how much they have learned | socially from the first parties when I was embarassed by Jan and Colleen | physically fighting over boys. | | I hadn't seen Janice for years. She was one of the kids I coached in | gymnastics. | | So life is good, our kids grow up. The adult population was a mix of | parents, 's relatives, and staff from the homes where these kids | live. The House manager for 's house showed up late. He's really | cool. | | So far as I can tell, none of the kids works at any single job full | time. Some have volunteer jobs in the political arena as advocates. | Some have volunteer jobs and Amy is probably in a " day program " . All | are now clearly adults. | | Lives seem to range from family centric (Mitch and Amy) to one with | friends, often within their own living group which often has some | family. Seeing them clearly changes one's view of the drab view of the | dismal group home with colorless people forever having to simply do what | the staff wants them to do. Interesting personal relationships and as | always very interesting people with ds. | | Rick .. we always talked about " letting go " , and it has mostly happened | | | | Click reply to all for messages to go to the list. Just hit reply for | messages to go to the sender of the message. | Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2004 Report Share Posted June 27, 2004 Thanks for sharing, Rick. I need to hear stories like this. Sounds like it was a really great party. Our children do have bright futures, of this I am assured. Jackie > Today was Kingsley's 30th Birthday and Jan and I went to the > party. It was a wonderful reunion for many of our kids and even more > wonderful to see them as adults. They haven't seen Jan for five years, > but she was welcomed back. > > Lets see there was of course, and Mitch who has moved back from > Ohio where he spent nearly a decade. Then there was Colleen, , > Ellen,, Kim, and and also 's new house mates who I > didn't manage to meet. These kids got to know each other 17 years ago > when was 13 and his Mom started the Downs Teens Parties, which > were a monthly gathering with the kids in one part of the house and the > parents in another, much like today. The parties continue, but they > evolved into teens and young adults gatherings. > > So the youngest of today's crowd is about 25. Some like Kim, Colleen, > and Jan are thin like they were at 13 (although Jan has been way and way > down in the process). Everyone I talked to had moved out from home, > either into a group home, or in the case of Jan and Mitch into their own > place except for Amy who is still with her Mom for a while. > > These kids are the product of being allowed an education and of > supportive parents. What a neat bunch and how much they have learned > socially from the first parties when I was embarassed by Jan and Colleen > physically fighting over boys. > > I hadn't seen Janice for years. She was one of the kids I coached in > gymnastics. > > So life is good, our kids grow up. The adult population was a mix of > parents, 's relatives, and staff from the homes where these kids > live. The House manager for 's house showed up late. He's really > cool. > > So far as I can tell, none of the kids works at any single job full > time. Some have volunteer jobs in the political arena as advocates. > Some have volunteer jobs and Amy is probably in a " day program " . All > are now clearly adults. > > Lives seem to range from family centric (Mitch and Amy) to one with > friends, often within their own living group which often has some > family. Seeing them clearly changes one's view of the drab view of the > dismal group home with colorless people forever having to simply do what > the staff wants them to do. Interesting personal relationships and as > always very interesting people with ds. > > Rick .. we always talked about " letting go " , and it has mostly happened > > > > Click reply to all for messages to go to the list. Just hit reply for messages > to go to the sender of the message. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 I am getting excited to read that some members are thinking about a reunion meeting or a first/time meeting, whatever! I have done this before with another online group. It was great! I was in a cancer survivors discussion group in 1995. We became quite close and decided to meet yearly. We went to a city where one of the members lived. (but Vegas is a great idea because it is easily accessible for most everyone in the US/Canada). My former group met in Chicago, Portland, Ore., San , Tx., and New Jersey. Soon people became a little less active on the discussion board because they were getting on with their lives after recovery, (and some of them unfortunately, died). The meetings ended, but we still keep in touch online now and then. Some of my favorite memories are from visits to those places with those special people. Now, maybe the opportunity may present itself again to do a similar thing. I would love to attend and meet other CML'ers. Vegas would be fine with me. Include me in the plans, I could fill you in on how the group met and some things we did. One thing that was interesting.....we had written extensively to each other, but it was a surprise to meet and hear the many regional accents that people had! It hadn't been expected, but we enjoyed it. Vegas here I come! in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 - Sounds like you  should certainly be on the meet/greet committee....do we have a committee-lol? I bet we would be one of the most interesting groups to hit Vegas with our various attributes- puffy eyes, lighter skin, gastric distress- and our amazing spirit and sense of humor. But doesn't Lottie live in Louisiana- I could do Mardi Gras 2011. Or maybe we should meet at the next ASH conference and show them the real face of CML. I like 's idea that they moved around.  It would give different people a chance to come. Maybe someone isn't able to travel across country but they could drive to the next state.  I'm excited also!!! ________________________________ From: " nchando@... " <nchando@...> Sent: Fri, November 13, 2009 2:05:08 PM Subject: [ ] reunion  I am getting excited to read that some members are thinking about a reunion meeting or a first/time meeting, whatever! I have done this before with another online group. It was great! I was in a cancer survivors discussion group in 1995. We became quite close and decided to meet yearly. We went to a city where one of the members lived. (but Vegas is a great idea because it is easily accessible for most everyone in the US/Canada). My former group met in Chicago, Portland, Ore., San , Tx., and New Jersey. Soon people became a little less active on the discussion board because they were getting on with their lives after recovery, (and some of them unfortunately, died). The meetings ended, but we still keep in touch online now and then. Some of my favorite memories are from visits to those places with those special people. Now, maybe the opportunity may present itself again to do a similar thing. I would love to attend and meet other CML'ers. Vegas would be fine with me. Include me in the plans, I could fill you in on how the group met and some things we did. One thing that was interesting. ....we had written extensively to each other, but it was a surprise to meet and hear the many regional accents that people had! It hadn't been expected, but we enjoyed it. Vegas here I come! in NY Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 How about Nashville TN. Willing to travel just got the ok from the Onc see you in 6 months.So off to south TX for the winter. TN. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 where in south Texas do you spend your winter Anita ________________________________ From: Shipley <paulorkay@...> Sent: Sat, November 14, 2009 6:41:02 PM Subject: Re: [ ] reunion How about Nashville TN. Willing to travel just got the ok from the Onc see you in 6 months.So off to south TX for the winter. TN. Quote Link to comment Share on other sites More sharing options...
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