Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 Hi Kimi, , and Mike, Over the years I've noticed a pattern of young parents with newly diagnosed or recently deceased children subscribing to the group and then quickly unsubscribing. As a result I've been thinking about the description on the home page and would like to suggest changing the beginning. The whole description is at the bottom. Here's what I'm suggesting for the first part: We are a group of people living with SMA and our family members, friends, caregivers, health care practitioners, and loved ones. Most of are teenagers and adults living independently or preparing to make such a transition. We are also parents of children with SMA preparing our children as they grow having rich fulfilling lives. What do you think? Feel free to tinker or disagree with changes. Alana Description For those with SMA and their family, friends, caregivers, doctors and loved ones. A FEW RULES * The list members come from many backgrounds, ages and beliefs so all members must be tolerant and respectful to all members opinons even if you disagree with that opinion. No flaming (calling members names, personal attacks on another member, starting fights just for fun, etc.). * 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/guardian 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 i like it! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2010 Report Share Posted January 10, 2010 I think it's a good idea. Maybe include something like 'the core of our group are adults with SMA' or something like that? bettylou -owner wrote: > > > Hi Kimi, , and Mike, > > Over the years I've noticed a pattern of young parents with newly > diagnosed or recently deceased children subscribing to the group and > then quickly unsubscribing. As a result I've been thinking about the > description on the home page and would like to suggest > changing the beginning. The whole description is at the bottom. Here's > what I'm suggesting for the first part: > > We are a group of people living with SMA and our family members, > friends, caregivers, health care practitioners, and loved ones. Most of > are teenagers and adults living independently or preparing to make such > a transition. We are also parents of children with SMA preparing our > children as they grow having rich fulfilling lives. > > What do you think? Feel free to tinker or disagree with changes. > > Alana > > Description > > For those with SMA and their family, friends, caregivers, doctors and > loved ones. > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs so all > members must be tolerant and respectful to all members opinons even if > you disagree with that opinion. No flaming (calling members names, > personal attacks on another member, starting fights just for fun, etc.). > > * 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/guardian 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. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2010 Report Share Posted January 11, 2010 Alana, I have no problem with changing the group description. Maybe we can add some links for newly diagnosed families to access so that they can find the support and info they need. Links like _www.smasupport.com_ (http://www.smasupport.com) or FSMA and MDA's sites. Maybe this would reinforce the idea that the group is more geared towards those already living with SMA for sometime and their loved ones. Plus this still allows the group to support all people dealing with SMA by providing the correct resources like intended this group to be all about. Kimi In a message dated 1/10/2010 3:14:32 P.M. Eastern Standard Time, -owner writes: Hi Kimi, , and Mike, Over the years I've noticed a pattern of young parents with newly diagnosed or recently deceased children subscribing to the group and then quickly unsubscribing. As a result I've been thinking about the description on the home page and would like to suggest changing the beginning. The whole description is at the bottom. Here's what I'm suggesting for the first part: We are a group of people living with SMA and our family members, friends, caregivers, health care practitioners, and loved ones. Most of are teenagers and adults living independently or preparing to make such a transition. We are also parents of children with SMA preparing our children as they grow having rich fulfilling lives. What do you think? Feel free to tinker or disagree with changes. Alana Description For those with SMA and their family, friends, caregivers, doctors and loved ones. A FEW RULES * The list members come from many backgrounds, ages and beliefs so all members must be tolerant and respectful to all members opinons even if you disagree with that opinion. No flaming (calling members names, personal attacks on another member, starting fights just for fun, etc.). * 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/guardian 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 I like it. Very positive. ________________________________ From: " -owner " <-owner > Sent: Sun, January 10, 2010 3:10:44 PM Subject: Group Description  Hi Kimi, , and Mike, Over the years I've noticed a pattern of young parents with newly diagnosed or recently deceased children subscribing to the group and then quickly unsubscribing. As a result I've been thinking about the description on the home page and would like to suggest changing the beginning. The whole description is at the bottom. Here's what I'm suggesting for the first part: We are a group of people living with SMA and our family members, friends, caregivers, health care practitioners, and loved ones. Most of are teenagers and adults living independently or preparing to make such a transition. We are also parents of children with SMA preparing our children as they grow having rich fulfilling lives. What do you think? Feel free to tinker or disagree with changes. Alana Description For those with SMA and their family, friends, caregivers, doctors and loved ones. A FEW RULES * The list members come from many backgrounds, ages and beliefs so all members must be tolerant and respectful to all members opinons even if you disagree with that opinion. No flaming (calling members names, personal attacks on another member, starting fights just for fun, etc.). * 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/guardian 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2010 Report Share Posted January 15, 2010 Please remember you can always point any of these families (or ANYONE for that matter) to www.smaspace.com -- there is a lot of great and private support happening there. Thanks, nate N A T E L E E 443-355-4090 [image: Blogger] <blog.hopeforemily.com>[image: Youtube]<youtube.com/miershpedankl>[image: Twitter] <twitter.com/natedlee>[image: Plaxo] <miershpedankl.myplaxo.com> [image: del.icio.us] <delicious.com/miershpedankl>[image: Facebook]<facebook.com/miershpedankl>[image: Picasa] <picasaweb.google.com/ndfamily>[image: Last.fm]<http://www.last.fm/user/miershpedankl> [image: Friendfeed] <friendfeed.com/miershpedankl>[image: Google]<http://www.google.com/profiles/ndlee1>[image: Ning] <http://www.ning.com/natedlee> On Fri, Jan 15, 2010 at 5:12 PM, Larbes <lindalarbes@...> wrote: > > > I like it. Very positive. > > > > ________________________________ > From: " -owner <-owner%40> " > <-owner <-owner%40>> > <%40> > Sent: Sun, January 10, 2010 3:10:44 PM > Subject: Group Description > > > Hi Kimi, , and Mike, > > Over the years I've noticed a pattern of young parents with newly diagnosed > or recently deceased children subscribing to the group and then quickly > unsubscribing. As a result I've been thinking about the description on the > home page and would like to suggest changing the beginning. The > whole description is at the bottom. Here's what I'm suggesting for the first > part: > > We are a group of people living with SMA and our family members, friends, > caregivers, health care practitioners, and loved ones. Most of are teenagers > and adults living independently or preparing to make such a transition. We > are also parents of children with SMA preparing our children as they grow > having rich fulfilling lives. > > What do you think? Feel free to tinker or disagree with changes. > > Alana > > Description > > For those with SMA and their family, friends, caregivers, doctors and loved > ones. > > A FEW RULES > > * The list members come from many backgrounds, ages and beliefs so all > members must be tolerant and respectful to all members opinons even if you > disagree with that opinion. No flaming (calling members names, personal > attacks on another member, starting fights just for fun, etc.). > > * 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/guardian 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. > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.