Re: Tips On Starting A CF Support Group

[Guest guest]

OMGosh Jen Hello it is me Katy Bean

ALOHA from Hawaii. It was so neat to hear from you .. I was one of the

Parents that went to The support group with Jen until the Military moved us

to Hawaii. Jen and the group gave us so much support while we were in the

yo-yo period of diagnosis of the boys and getting the vest for them. ( by

the way jen They got the vest 5 months after we set foot in Hawaii and

Elijah had a positive diagnoses within 6 months =). We always loved the

support group and really loved the Cf Great Strides Jen always did a

wonderful job. I think that Support groups are very Important something that

I really miss now that we are here in Hawaii. There are only 21 Patents in

the Clinic here in Hawaii because of it being Asian and Hawaiian back ground

here not many know about CF because not many have it mostly just the

Military Families. I am a true believer in Support Groups if nothing else

for the parents that need that extra support.

Katy

I have told you these things, so that in me you may have peace. In this

world you will have trouble. But take heart! I have overcome the world.

16:33

-- Tips On Starting A CF Support Group

Good evening from VA!

Noticing lately that many of you are looking for support groups or are

considering forming one.

Before moving to VA this past summer, I ran a support group in sville,

TN (45 miles NW of Nashville) for 5 years. We met at a Shoney's Restaurant

in a nonsmoking party room.

The experiences we shared, ups and downs, good days and bad days, new

friendships, and even raising money for Great Strides was INCREDIBLE!

This is how I got started 5 years ago ... I met the most wonderful social

worker at Vanderbilt CF Clinic back in 1998 and she called all CF Families

within a 30-mile radius of my town to let them know that I was considering

forming a CF Support Group. HOW WONDERFUL WAS THAT! I gave her permission

to give out my name, phone number, and email address. Interested folks

contacted me ... that was the beginning ... and over time, our group grew

and grew to about 20-25 folks. Most attendees were not CF patients ... we

encouraged family members of CF patients, friends, neighbors, etc. who

wanted to be involved. And, we even had some guest speakers come. If CF

patients did want to attend, we were very, very careful about hygiene,

cross-contamination, etc. sitting them at appropriate distances from one

another ... there was not a problem. Again, most attendees were FAMILY

MEMBERS AND FRIENDS. Our town had a population of about 100,000, and

approximately 15 CF patients that we knew of ... very few actual patients

attended ... but many parents, grandparents, friends, etc.

I will never forget my CF Support Group in sville, TN ... everlasting

memories and friendships made!

Chastain

Mom of , , and Henry, 6-year-old with CF

[Guest guest]

Hey Jen,

I miss you a lot. It is very hard keeping the group going since you left

though. We have had one meeting. There were a lot of problems because my

was in the hospital and then Zachary went in. We are trying to work out the

bugs. Hope all is well with the little cutie pie, Henry.

Love,

Peggy