Guest guest Posted December 30, 2001 Report Share Posted December 30, 2001 Doris, A newsletter is something on the radar screen. We have quite a few articles and ideas but it is just not the 'manpower' to do it. The plan was to start with an 'On-line' version and then progess to a printed/mailed version shortly after. Are you volunteering? * Marc Share President & Executive Director Research Institute and Parents Coalition 'Working To Give Our Children A Future' Fw: Newsletter Re: Newsletter > > > > > hello all! > > > Tina/Suzanne: I've included D and Sharrill H on this email > > > just to make sure I " m not going loony or misheard something. > > > First - there's a newsletter sent out ? When I last queried > > > a few people a few months ago, I was told " it was in the works " . > > > Maybe I " m mistaken, but was anything sent out informing > > > parents/interested folk that there was a newsletter? > > > Maybe I deleted that email ... > > > > > > A newsletter is something I feel is extremely important. > > > I know that those of us in the East often feel misplaced > > > and 'not connected' with the movement. > > > A newsletter would be a wonderful binder. > > > > > > (story time: when steve and I joined the local ASA chapter, > > > they had a newsletter but it was pretty sad. Monthly meetings > > > also consisted of maybe 5 parents. > > > I expressed my .05 to the chapter heads - I didn't volunteer to > > > do the newsletter at that time because we were still new to this > > > world and was just starting his ABA program. > > > But I was lucky, and another member stepped up. He had > > > experience in this area and would be happy to create a > > > 'more informative source of information for the County > > > autism community'. We conducted a survey of families, > > > asking what they would like to see yadda yadda. > > > Many of the families didn't have email, so they didn't see > > > the FEAT listings. They didn't know about 'new' ideas > > > concerning autism. So, the new editor of the newsletter > > > began looking thru the FEAT listings and anything he could > > > find and adding those articles of top interest to the newsletter. > > > They added a 'Family of the Month' spotlight (Our Family is > > > being done for January - just in time for the meeting at the end > > > of the month where a local Dr will speak on Medical interventions > > > for Autism); I told them I would submit an article a few times a > > > year which would be a GFCF recipe. .... > > > the list went on.... you should see the newsletter now - > > > quite impressive considering what it used to look like. > > > There is still room to grow - the number of people > > > at Nov's meeting was well over 20 ... > > > Some of families can't make the meetings - the newsletter > > > is their only source of information. > > > > > > I write up a 'newsletter' of sorts for the group of friends/family > > > who are raising money for 's ABA program. > > > Jan 11 is our last fundraiser. The newsletter is a basic > > > " hello - this is what has happened, this is what is happening, > > > and this is what will be happening " . I usually mail it our via USPS > > > to the members and have it placed in my church's newsletter. > > > The response is always upbeat - everyone likes to hear how > > > is doing. Of course, I always add a paragraph on ) > > > > > > > > > - I would start out with a vision of a quarterly newsletter. The > > > Coalition is in its infancy. We need to get support not only from the > > > autism community but from the medical and business communities as well. > > > Sharrill and I live in an area saturated with Medical univ - > > > Univ of land, Hopkins, Mason, town and NIH. > > > We're spitting distance from Princeton. Yet I know for a fact few > > Doctors > > > at Univ of Md and JHU know about . They are familiar with Dr > > Goldberg > > > but have a fuzzy idea of what he's doing. > > > > > > - I know it will cost more, but send the newsletter out via USPS. > > > Many folks either don't use email/internet or read if only occasionly > > > (depending > > > on time). Hardcopy newsletters are easy to give to people, drop off at > > > 'convenient locations' ) for people's viewing pleasure. ..... > > > > > > - I think the newsletter should contain a letter from our Leader, Dr G. > > > I hate to use these comparisons, but it's like the Captain addressing > > the > > > sailors; > > > a Priest addressing his congregation; the President addressing the > > people > > > of the USA. We need to hear from him every now and then. > > > - research articles are always good. There is one emailer on the > > bbs > > > who comes across some very interesting Immune related research > > articles. > > > I personally have been saving her postings and adding them to an ever > > > growing file of " related articles " . These are the research items > > I > > > print and give to my son's Doctors. > > > - Information on related things - SSRIs, antivirals, kutapressin... > > > what are they and why are we using them ? > > > - Perhaps regional items: > > > ex. East Coast - it's spring time and you know what that means. > > > Yep - pollen! here are some ways you may be able to relieve > > > some of those allergy symptoms ... > > > (by they way, I should be able to pass along some of this info > > > after Jan 9. has an appt with a local allergist who treats > > kids > > > with allergies and behavioral disorders up and down the coast.) > > > - and yes, even include a Recipe section ) People have to eat ) ) > > > - how about a " If you're going to see Dr Goldberg section - > > > visited 3 hotels in the area and this is what she had to say .... > > > or > > > Hotel A and B will give families rooms for $50 a night. > > > or > > > A new theme park opened up this spring in Tarzana..... > > > or > > > Don't go to Laguna Beach.... sewage was spilled there recently. > > > > > > Some of this information I collected when I visited in August. > > > I hope to have an information pkt available soon. Generic stuff > > > which will grow.... Sharrill Hemry's advice of renting a car with GPS > > > was invaluable !!! > > > > > > Seasoned families need to help the new families. > > > Calm their fears and pass information to them that might help them. > > > I usually ping Sharrill, and Aimee P. for information ) ) > > > But what if a new family isn't aware of local families? > > > (and yes Sharrill and : I do plan to have another picnic > > > this year ) .....) > > > > > > Sorry for going on for so long. > > > But the news of " there is a newsletter being circulated " > > > got the juice moving ) > > > > > > > > > doris > > > - land > > > > > > > > > > > > > > > > > > Cure2000@... wrote: > > > > > > > It is my understanding that the newsletter is sent via email only. Is > > this > > > > correct Tina? > > > > > > > > It is primarily e-mail. i send about 25 postal to those who aren't on > > line. > > > > > > > > How often is one sent? > > > > > > > > Whenever I have some info to pass on to the group, announcements, etc. > > No > > > > consistent schedule. > > > > > > > > When is the next one expected? > > > > > > > > I'm about to send another out announcing the video conference, and if > > Marc > > > > wants me to, the phone conference minutes. > > > > > > > > Do > > > > you have content information available? > > > > > > > > It has simply been an info. hwy to keep us all up to speed and > > connected. So > > > > the content comes from whatever we are doing and need to inform the > > group > > > > about, or announcements or requests we need from them. > > > > > > > > Is there an expected length? > > > > > > > > Whatever it takes to include what is needed. > > > > > > > > I also understand that there is an " email " address file maintained by > > > > someone that is used for the newsletter. Is this correct? Do you have > > that > > > > file Tina? > > > > > > > > I do. I've been sending out the News letter in 4 different groups. i > > just > > > > created 3 large e-mail gruops and one postal mail group, i copy and > > paste and > > > > send it out! i can easily pass the lists to you. i get requests for > > people > > > > to be added daily. So it is ever growing. > > > > > > > > Please let us know your vision for the newsletter. What would you see > > as > > > > our next steps? > > > > > > > > First of all, these are great questions that you have asked! My vision > > is > > > > that it would at some point, become a regular monthly or quartely > > > > publication, with a little better form and submissions from Dr. G. and > > our > > > > research board, committess, pres, etc. But also remain an info hwy to > > get > > > > info out quickly to our group. So maybe formal, and informal updates. > > Also, > > > > i was trying to get it sent out in a different method (like the FEAT > > > > newsletter) instead of grupos of e-mails, Although, no one has seemd to > > mind > > > > it so far. > > > > > > > > This is obviously not my forte. so I'm sure your visions would probably > > be > > > > better paths to follow! i will help you any way i can, but i think you > > can > > > > pretty much do what you want with it and have fun making it into your > > own > > > > creation. > > > > > > > > Tina > > > > > > > > Tina M. Hendrix > > > > Cure2000@... > > > > Vice-President, California Coalition > > > > Neuro-Immune Dysfunction Syndromes > > > > Autism Spectrum Disorder, ADD/ADHD, Learning Disorders, Hyperactivity, > > CFS, > > > > etc. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2002 Report Share Posted October 2, 2002 There has been no newsletter published .... yet ) Keep your eyes peeled to this board for future announcements. Hopefully, if Suzanne R. and I can continue being the burrs we have been, the first newsletter should be ready for distro soon. doris land Quote Link to comment Share on other sites More sharing options...
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