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Featured Articles
Reflections of our First 4p- Conference – 2010
My husband Matt and I attended the conference in Utah this summer with our son Frank, who was eight months old at the time. We were "first-time" attendees and were very unsure of what to expect. We weren't sure how many people would be attending, whether we would find the information useful to us, or even whether we would find it encouraging or … [Read The Rest of This Article...]
An Amazing Connection Made
You won’t believe what I‘m about to share with you, I barely do! My husband, daughter Elizabeth and I went out to lunch yesterday, a place we go to once every few weeks. They usually give us the same table which has a big space by the side for us to place our pram (estate is precious/expensive here) but yesterday it was occupied. I happened … [Read The Rest of This Article...]
Cookies For A Koz
cookie for a koz! 4P- Support Group Holiday Fundraiser, 10% of purchases will go to our group! This season we're partnering with Cookies for a Koz, in a fund raising effort for the 4p- SG, to supplement the expenses of our upcoming 2012 National Conference. Visit http://www.cookiesforakoz.com to purchase delicious “fresh … [Read The Rest of This Article...]
Craig Richardson: A Life Worth Living, With Disabilities
As the mother of a child with Wolf-Hirschhorn Syndrome, I experienced most of the emotions possible in parenting Craig over a 25-year period, including shock, sadness, confusion, fear, crisis, overwhelming love, grief, anguish, numbing fatigue, anger, joy, pride--the list goes on and on. When he was three, I wrote the letter to Exceptional Parent … [Read The Rest of This Article...]
A letter from Dr. Calhoun
*This article appeared in our August 2011 newsletter. I first became involved with the 4p- support group right at the end of my first year of fellowship in Medical Genetics at the advice of my mentor, Dr. John Carey. It has been an absolutely delightful experience and I thought I would take a few minutes to reflect on this last year. I‘m now in … [Read The Rest of This Article...]
Featured Sibling Articles
What are SibShops?
Sibshops acknowledge that being the brother or sister of a person with special needs is for some a good thing, others a not-so-good thing, and for many, somewhere in-between. They reflect a belief that brothers and sisters have much to offer one another — if they are given a chance. Sibshops are a spirited mix of new games (designed to be unique, … [Read The Rest Of This Article...]
Happy 17th Birthday Ryan!
*Article appeared in our November 2010 newsletter. By: Tom and Susan Bear Over the weekend, our middle son - Tyler was given a school Health assignment of bringing home a computerized baby and caring for this mechanical baby’s need. Latrisha, as he named her, provided a pretty regular schedule for our son, Tyler. In fact, he got the … [Read The Rest Of This Article...]
Devoted Siblings Are Honored
Carol wrote into Kathie Lee and Hoda on the Today Show to honor her two children, Alex and Rebecca, who have spent most of their lives supporting their brother, David, who has Wolf-Hirschhorn Syndrome. Broadway performer Capathia Jenkins performs a special song for the family. Visit msnbc.com for breaking news, world news, and news about the … [Read The Rest Of This Article...]
Siblings – How are we affected?
The following was written by Maria Sjodin, an older sibling to Leah Sjodin (4p-). Maria wrote the article for a Families Career Community Leaders of America in 2006. Thanks you for sharing this with us. I can say now that being a sibling of a child with 4p- hasn’t always … [Read The Rest Of This Article...]
Archive Articles
Is This Going to be Sad?
A “Wolf-Hirschhorn family reunion” is a time to share tears and laughter It wasn’t sad: Enjoying an impromptu get-together at the second Wolf-Hirschhorn reunion are (from left) Stephanie H., Wanda H., Christopher H., Craig R. (partial hidden), AJ G., Christine G., Justin F., Kelly G., and Brian J. When Craig Richardson was diagnosed … [Read More...]
4p- Photos and Captions Needed
The 4p- Support Group is attending the 2011 American Society of Human Genetics/International Congress of Human Genetics annual meeting in October in Montreal. This is a very big step for our organization! The ASHG/ICHG annual meetings are attended by over 6000 scientists/doctors/geneticists. Our goal is to bring greater awareness to 4p- Syndrome. … [Read More...]
