Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 Just wondered if other on this list were also chosen to be a " poster child " at one time. I believe I was 5 when I did it. I don't remember a whole lot except for meeting a lot of " stars " , being in a parade and making a commercial with Jerry. oh I remember a HUGE cake too but don't remember what is was for lol alrt@... wrote: some of us feel that the format of a telethon perpetuates a lot of pity and condescension towards the population in focus. there are also a lot of questions about overhead costs vs other more grassroots campaigns as run by FSMA. every telethon season we debate about this on this list. more power to those of you who get a lot from watching and/or participating. i had fun as a poster child when i was 11. now i just feel uncomfortable when i try to watch the telethon or interact with the local MDA event coordinators who staff the clinic on MD days. my last encounter at age 37 was still saturated with sugary condescension. the women certainly did not view me as a peer, and when it became apparent that i was a seasoned service provider, they disappeared. alana Why would u want to eliminate the telethon? The money goes to research to find treatments and possibly a cure for NMD. Do you not care about the future generations? Its like $60/min for a min of research here in the US. Where would all the money come from w/out the annual telethon? Kimi A FEW RULES * The list members come from many backgrounds, ages and beliefs So all members most be tolerant and respectful to all members. * Some adult language and topics (like sexual health, swearing..) may occur occasionally in emails. Over use of inappropriate language will not be allowed. If your under 16 ask your parents/gaurdian before you join the list. * No SPAMMING or sending numerous emails unrelated to the topics of spinal muscular atrophy, health, and the daily issues of the disabled. Post message: Subscribe: -subscribe Unsubscribe: -unsubscribe List manager: (Sexy Mature Artist) Email: Esma1999@... oogroups.com List manager: (Sexy Mature Artist) Email: Esma1999@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 I was! 1991 AND 1993-for Mn. Never met Jerry- wish I have. Nobody else has dedicated 40+ years to finding a cure. Yes, I'm well aware they cant " heal " me, but my little cousin was just diagnosed and I pray he doesnt have to go thru I've been thru due to MD. Why be mad at Jerry he didnt make us this way! Jodi & Maggie May Accessible Travel Disability Travel Specialist and Service Dog " Making a way for YOU to get away! " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2005 Report Share Posted September 11, 2005 I was. I believe 1986-87 (?) I was very young so those dates could be off a couple digits. I remember doing a lot of print modeling and radio/tv shows. I loved doing it but always got nervous right before I was to begin " performing " (it was all scripted) and my aunt and uncle would always promise me they would take me to all-I-could-eat ice cream afterward. Mmm!! My excuse... my mom made me do it (and she was only a child herself)! <3 Kendra > some of us feel that the format of a telethon perpetuates a lot of pity and condescension towards the population in focus. there are also a lot of questions about overhead costs vs other more grassroots campaigns as run by FSMA. > > every telethon season we debate about this on this list. more power to those of you who get a lot from watching and/or participating. i had fun as a poster child when i was 11. now i just feel uncomfortable when i try to watch the telethon or interact with the local MDA event coordinators who staff the clinic on MD days. my last encounter at age 37 was still saturated with sugary condescension. the women certainly did not view me as a peer, and when it became apparent that i was a seasoned service provider, they disappeared. > > alana > > > Why would u want to eliminate the telethon? The money goes to research to > find treatments and possibly a cure for NMD. Do you not care about the future > generations? Its like $60/min for a min of research here in the US. Where > would all the money come from w/out the annual telethon? > Kimi > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@a... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@a... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 I was a couple of times. I was when I was 5 or so in Fl, so that would be 1983. All I remember is photo shoots for the paper. Then I was Southeastern PA poster child in 88-89. I made a whole lot of media and fundraising appearances, and interview/ " home story " at the telethon. In 90 I was PA state poster child. Did the same sorta things plus went to a fancy dinner where they gave me a cabbage patch doll " the one w/real hair. " haha, they were the hot toy for girls then. I met and had pics w/all the local tv personalities. I have a scrap book of all these things, including my own stationary w/my pic on it. I even met the governor of PA at that time, the late Bob Casey. I had a positive experience w/MDA but, after I turned 21 they really had no services for me anymore. No camp, no interviews. I did go and be a " regular " volunteer for a few yrs. A couple of old MDA counselors from camp, in my yrs, are now making a non profit " social " group for the graduates of camp and ppl w/other disabilities over 18. They have outings and mini retreats like camp, but u need to find a caregiver b/c they r such a new group w/limited funds. MDA wanted nothing to really do w/it I heard. I wish MDA could have weekend retreats or getaways for us older ppl. I do think there might be a`support group in the city, but I never know when its held and w/the cost of gas another reason to go to the city is not an option w/a huge van (over $100 to fill). My hospital CHOP has been trying to help the young adult group by having a new program my friend pioneered, and that's where I get most of my support and help give back as a mentor. I think MDA could start something where " older " MDers could mentor " young " MDers to help w/college, employment/SSI, independent living, etc. I think that could be a practical use of funds for those of us who do not benefit from camp anymore. Anyone know how we could " inform " MDA that these things could be useful? I'm not dissing Jerry or MDA, I think they try very hard to fund research which will help future generations. Just think there's a gap of ppl they are not really servicing unless u have ALS. Just my $0.02. Kimi In a message dated 9/11/2005 9:41:53 P.M. Eastern Daylight Time, j0yeuxx@... writes: Just wondered if other on this list were also chosen to be a " poster child " at one time. I believe I was 5 when I did it. I don't remember a whole lot exc ept for meeting a lot of " stars " , being in a parade and making a commercial with Jerry. oh I remember a HUGE cake too but don't remember what is was for lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 In a message dated 9/11/2005 9:41:53 P.M. Eastern Daylight Time, j0yeuxx@... writes: and when it became apparent that i was a seasoned service provider, they disappeared. Alana, What did you mean here?? I didn't understand. Kimi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Me too! Only because I am a Canadian it was CTV/CFTO that televised the telethon. The stars I met that year were Shatner and Anka! I still have Anka's signature photo card! I was easily wooed back then! I also had my eyes made 30ft tall when Toronto-Dominion Tower first opened! Angie (As a kid, my Mom did a lot of fun stuff as I was the poster child in the 70's (just can't remember what year). Mac's Milk was one of our biggest sponsors then too). On 2005.09.11 21:41, Joy wrote: > Just wondered if other on this list were also chosen to be a " poster child " > at one time. I believe I was 5 when I did it. I don't remember a whole lot > except for meeting a lot of " stars " , being in a parade and making a > commercial with Jerry. oh I remember a HUGE cake too but don't remember > what is was for lol > > > alrt@... wrote: > some of us feel that the format of a telethon perpetuates a lot of pity and > condescension towards the population in focus. there are also a lot of > questions about overhead costs vs other more grassroots campaigns as run by > FSMA. > > every telethon season we debate about this on this list. more power to > those of you who get a lot from watching and/or participating. i had fun as > a poster child when i was 11. now i just feel uncomfortable when i try to > watch the telethon or interact with the local MDA event coordinators who > staff the clinic on MD days. my last encounter at age 37 was still > saturated with sugary condescension. the women certainly did not view me as > a peer, and when it became apparent that i was a seasoned service provider, > they disappeared. > > alana > > > Why would u want to eliminate the telethon? The money goes to research to > find treatments and possibly a cure for NMD. Do you not care about the > future generations? Its like $60/min for a min of research here in the US. > Where would all the money come from w/out the annual telethon? > Kimi > > > > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs So all > members most be tolerant and respectful to all members. > > * Some adult language and topics (like sexual health, swearing..) may > occur occasionally in emails. Over use of inappropriate language will > not be allowed. If your under 16 ask your parents/gaurdian before you > join the list. > > * No SPAMMING or sending numerous emails unrelated to the topics of > spinal muscular atrophy, health, and the daily issues of the disabled. > > Post message: > Subscribe: -subscribe > Unsubscribe: -unsubscribe > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > oogroups.com > > List manager: (Sexy Mature Artist) Email: Esma1999@... > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 I was the poster kid in Toledo, Ohio (NW Ohio) for a couple years. I think 76 and 77, but I'm not sure. It could've only been one year. Jenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 Alana, When people find out how much education I have and how well I did/do, they usually are shocked but compliment me. I usually just say thanks and say I couldn't have done it w/out great friends, nurses, and family (in that order IMO). What I hate is that I have no clue what I can do practically w/my education w/out losing insurance and benefits. I feel stupid when they ask me what I'm going to do. Today I did try to inquire about employment opportunities at the local independent living center, but dunno what I can offer them. So we'll see.... Kimi In a message dated 9/12/2005 4:43:31 P.M. Eastern Daylight Time, alrt@... writes: after they recovered from their initial shock that i worked, and had worked for more than 15 years ( " You doooo?! " ), i explained that i did work very similar to what they did, though, with more emphasis on policy and training. they were fascinated at first, but got uncomfortable when i tried to relate to them as peers. i haven't been related to so awkwardly since i met chuck's drunk co-workers at a holiday party who were startled by my wheelchair. one MDA staffer asked if i was willing to do a benefits or independent living workshop for the local support group. when i phoned and e-mailed 4 different times to schedule it, she and her replacement didn't respond. pretty odd to turn down free professional services. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2005 Report Share Posted September 12, 2005 after they recovered from their initial shock that i worked, and had worked for more than 15 years ( " You doooo?! " ), i explained that i did work very similar to what they did, though, with more emphasis on policy and training. they were fascinated at first, but got uncomfortable when i tried to relate to them as peers. i haven't been related to so awkwardly since i met chuck's drunk co-workers at a holiday party who were startled by my wheelchair. one MDA staffer asked if i was willing to do a benefits or independent living workshop for the local support group. when i phoned and e-mailed 4 different times to schedule it, she and her replacement didn't respond. pretty odd to turn down free professional services. >>and when it became apparent that i was a seasoned service provider, they >>disappeared. > > > >Alana, >What did you mean here?? I didn't understand. >Kimi > Quote Link to comment Share on other sites More sharing options...
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