Sunday, June 29, 2008

CLEFT SUPPORT GROUPS

There are a number of wonderful online support groups readily available. I am actually part of 6 different groups! And I recommend anyone who's life is affected by a cleft, to join one. My husband and I have had so many questions answered and we have made some life long friendships via these groups.

Now, you don't have to join 6 groups like I me- in fact you might want to just start with one (I have just found myself wanting to connect in a variety of ways). Below are a synopsis of various available groups and how to join them (they are all free):

WIDESMILES
This was the first email group that I joined. The list is run by Joanne Green, founder of Widesmiles.org and mother of 3 adopted children all born with clefts. She has a vast knowledge of clefts and always has had such wise, comforting words to share with all the new (and old) moms out there. She also has a wonderful children's book called "
Lippy the Lion" which describes perfectly the feelings of a mom or dad of a child with a cleft lip and/or palate.

To join Widesmiles, go to http://www.widesmiles2.org
, scroll down to the "Network With Others" bullet, and then click on the "cleft talk" tab. From there, it will take you to a page where you will want to click on the "subscribe to cleft talk" link.

CLEFTADVOCATE
This is a very large group, and you will get a lot of emails each day, so you might want to start a separate email or file folder in your inbox for the mail to go to. This is a wonderful list- very much like a big family. Debbie Oliver, who founded CleftAdvocate, runs this list. She has a daughter who 20 years ago was born with a cleft. Debbie is incredibly friendly and very connected and full of resources. She's done a wonderful job of training
pathfinders across the US who advocate cleft awareness and education, as well as advocating herself. Cleft Advocate has a great page called the state resource page which is gives an organized list of links for your specific state.

To join CleftAdvocate, go to
www.cleftadvocate.org, scroll down and click on the "Family to Family connection" tab located in the left side bar. Once you are there, read the disclaimer, and then click on the "click here to start" link.

CLEFTCLUB
This email group is actually geared towards adults with clefts, but I have found it interesting to "listen into". It has given me some insight and understanding of what my children may feel as they grow up with clefts.

To join cleft club, go to
www.cleftclub.com, and click on the blue "Join this group" tab.

KIDS WITH CLEFTS-UTAH
This is a local group to Utah which I have loved to be a part of since our boys' surgeon, Dr. Morales, is located in Salt Lake City, Utah at Primary Children's. Jenny Simmons, mom to 4 kids including Jack (born with a cleft), runs the group. She's great- with a fun sense of humor. Local groups are wonderful- they give you a chance to meet fellow local moms in person for play dates and gatherings. I also have felt that local groups have been great in that you can share experiences and questions in regards to your mutual surgeons/teams/hospitals.

To join Kids with clefts-Utah, go to
this page, and click on the "join this group" tab.

VIRGINIA SMILES
This is a great local group to the Virginia and DC area. We have utilized this group while we have been living in DC the past 2 years. The group is run by Paula Miller, mom to 4 kids, one of whom has a cleft. Virginia Smiles has an annual summer picnic in the Northern Virginia area, which is very fun to go to and meet other families in the area.

To join Virginia Smiles, go to
this page, and click on the "join this group" tab.

MORE THAN ONE CLEFT
This is a group I actually started myself. I found various other families via the online groups mentioned above who also had had more than one child born with a cleft, like my husband and I (geneticist call us multiplex families). I desired to create a group where we could gather and exchange thoughts and experiences. And most importantly, help each other not feel so alone. The group is currently very small, but I hope as more and more families find us, it will grow.

To join More than one cleft, go to
this page, and click on the "join this group" tab.

Once you join a group, don't be bashful, and send out an "introduction" email introducing you and your family!

6 comments:

Ranjit said...

Dear Anna - I found your blog incredibly informative! I am glad that you've come out with such a thoughtful blog, especially at a time when looking 'perfect' is a requisite for social acceptance. I sincerely hope that our society learn a thing or two from your book and learn to overcome its unexplained dislike for people with clefts!

Best.. Ranjit.

γ‚†γƒΌγ‹γ‚Š said...

Widesmile site has been in trouble on server since this April. A mirror site now opens in Japan at http://www.widesmiles2.org/

Shinichi

Anonymous said...

awesome blog, do you have twitter or facebook? i will bookmark this page thanks. peace maria

Anonymous said...

I really like your blog and i really appreciate the excellent quality content you are posting here for free for your online readers. thanks peace klara.

Anonymous said...

Greetings,

Thanks for sharing the link - but unfortunately it seems to be not working? Does anybody here at www.cleftnotes.blogspot.com have a mirror or another source?


Thanks,
Daniel

Fowler family said...

Daniel, which link is not working for you? I tried them all and they seem to be functioning. Let me know which link in particular and I can look into it further. Thanks!