I am considering starting a support group in the Albany/Schenectady, NY area and was going to approach my local library about getting space from them on a regular, monthly basis. I would just like it to be a monthly or bi-monthly meeting where parents of food-allergic children can meet and share tips, experiences and have our children meet each other for support.
For those of you who belong to a support group, is it for PA/TNA only or a general food allergy support group?
Where do you meet? How often? Are there general rules that you follow? Is is very casual or do you have a set agenda with speakers, "experts", etc.?
Just wanted to get an idea from all of you out there who belong to one. I would post on the support group board but it doesn't seem to get checked much lately.
Thanks!
LJ
P.S. Of course, the first "rule" I will put into place is no food at the meetings. :-)
My support group meets monthly, and it's open to anyone concerned about food allergies. Almost everyone has a food-allergic child. Sometimes adults come because they themselves have food allergies. Meetings are for adults; there are no children there. Usually it's the mothers who come, but men also are welcome.
Meetings typically comprise of at least 10 people, so it's necessary to have some structure to it. We go around the table and each introduce ourselves and give the ages and allergies for our children. Then, we take turns going around the table saying anything that's pressing for us: a challenging situation we recently faced, looking for advice on how to handle a situation, venting frustration about something, or whatever else is on people's minds. It's our norm to let people coming to the meeting for the first time speak first, if they wish to do so. Some new folks prefer to hear others go first, and then they like to speak later on.
We also have a Yahoo group board. This allows for questions and support in between meetings. It also allows an opportunity for people to be involved who aren't able to make it to the in-person meeting.
Good luck starting your support group!
LJ, I live near Albany. Would you mind e-mailing me? My e-mail is in my profile.
Thanks!
I used to go to a support group once a month. We met at a restaurant one evening a month. Our kids were all different ages and in elem. school, some younger. Some of the moms worked so the daytime thing did not work.
When I lived in Dallas I belonged to a support group. Frankly, I wasn't able to go to many of the meetings, but they were held at a suburban hospital that gave us space. One meeting involved getting ready to send your child to school, and materials were passed out to facilitate things. These were things other families had developed, info from FAAN, etc. We also had no children at the meetings.
At one meeting an allergist came to talk about allergies--what's going on in the body. It's funny--yesterday when cleaning up our Study, I found my notes from that--diagrams of mast cells during a reaction included, and while I pitched a lot of stuff, I kept that in my Peanut Allergy folder.
We went to a few halloween parties given by one of the members, and the kids of the support group were invited. We shared a comfort zone, and DS was able to eat treats safely there and play without care.
The support meetings were for all food allergies. There were parents of a child who was allergic to all meats but canned tuna and reacted to most vegetables. It was my first encounter with multiple food allergies really.
Oh--we let allergists know about the group and I believe even printed flyers for them to keep at their offices.
I live near Houston now, and there may be a support group, but I don't have time to go if there is. I did find our Dallas group helpful when I could go--and even when I couldn't.
Good luck in forming one.
You might want to contact the other groups in NY to see if they know of interested people in your area. We try to keep tabs on other groups in our state and they might be, too. If you don't have these links:
WNY Food Allergy Connection
PO Box 220; Clarence, NY 14031 e-mail: [email]allergy@adelphia.net[/email]
Brooklyn - Interacting Mothers of Allergic Children I.M.A. [url="http://simplytempting.com/about.html"]http://simplytempting.com/about.html[/url]
Rochester - FACTS [url="http://www.factsplace.com/"]http://www.factsplace.com/[/url]
Food Allergies: Coping, Educating, Supporting (FACES)
Support, education
Rose Boynton
315-492-3941
[email]rboynton@twcny.rr.com[/email]
Food Allergy Support and Education Group (FASE)
Support, education and advocacy
Port Washington, Long Island
Kelly Dennis
516- 767-2749
[email]kpkdenn3@optonline.net[/email]
Food Allergy Educational Alliance (FAEA)
Support, education
New York City
Sari Canell
917- 579-6363
[email]sbcanell@aol.com[/email]
Parents of Asthmatic and Allergic Children (PAAC)
Support, education
New York City
Caren Sanger & Kathy Franklin
[email]carsanger@aol.com[/email]
[email]kfranklin@msn.com[/email]
Other helpful links for starting a group are:
[url="http://aafa.org/esg_search.cfm#start"]http://aafa.org/esg_search.cfm#start[/url]
[url="http://www.mochallergies.org/starting-a-support-group/"]http://www.mochallergies.org/starting-a-support-group/[/url]
If possible try to find at least one other committed person to help you co-lead - it's really hard for one volunteer to keep a group up and running. We have a Yahoogroup that is super active and really glues our group together (probably more so than our meetings).
Keep us posted!
------------------
Jana
[url="http://www.seattlefoodallergy.org"]www.seattlefoodallergy.org[/url]
[This message has been edited by Jana R (edited December 28, 2006).]
Thanks for everyone's replies.
I never thought of asking a hospital if I could use space. That's a great idea. My son's allergist is attached to a local hospital. Maybe I will ask him at an appt we have in January.
Also, I don't know anyone else with an allergy. That's why I'm trying to find a support group. If anyone here is from the Albany-Schenectady area and is interested in co-leading, please let me know!
Thanks again!
LJ
My support group meets monthly, and it's open to anyone concerned about food allergies. Almost everyone has a food-allergic child. Sometimes adults come because they themselves have food allergies. Meetings are for adults; there are no children there. Usually it's the mothers who come, but men also are welcome.
Meetings typically comprise of at least 10 people, so it's necessary to have some structure to it. We go around the table and each introduce ourselves and give the ages and allergies for our children. Then, we take turns going around the table saying anything that's pressing for us: a challenging situation we recently faced, looking for advice on how to handle a situation, venting frustration about something, or whatever else is on people's minds. It's our norm to let people coming to the meeting for the first time speak first, if they wish to do so. Some new folks prefer to hear others go first, and then they like to speak later on.
We also have a Yahoo group board. This allows for questions and support in between meetings. It also allows an opportunity for people to be involved who aren't able to make it to the in-person meeting.
Good luck starting your support group!
LJ, I live near Albany. Would you mind e-mailing me? My e-mail is in my profile.
Thanks!
I used to go to a support group once a month. We met at a restaurant one evening a month. Our kids were all different ages and in elem. school, some younger. Some of the moms worked so the daytime thing did not work.
When I lived in Dallas I belonged to a support group. Frankly, I wasn't able to go to many of the meetings, but they were held at a suburban hospital that gave us space. One meeting involved getting ready to send your child to school, and materials were passed out to facilitate things. These were things other families had developed, info from FAAN, etc. We also had no children at the meetings.
At one meeting an allergist came to talk about allergies--what's going on in the body. It's funny--yesterday when cleaning up our Study, I found my notes from that--diagrams of mast cells during a reaction included, and while I pitched a lot of stuff, I kept that in my Peanut Allergy folder.
We went to a few halloween parties given by one of the members, and the kids of the support group were invited. We shared a comfort zone, and DS was able to eat treats safely there and play without care.
The support meetings were for all food allergies. There were parents of a child who was allergic to all meats but canned tuna and reacted to most vegetables. It was my first encounter with multiple food allergies really.
Oh--we let allergists know about the group and I believe even printed flyers for them to keep at their offices.
I live near Houston now, and there may be a support group, but I don't have time to go if there is. I did find our Dallas group helpful when I could go--and even when I couldn't.
Good luck in forming one.
Pages