With the launch of our new
Wolf-Hirschhorn Syndrome ~ Unique & United T-shirts
we are sponsoring a free T-shirt contest!
Enter here for you chance to win. We will not share or sell any information you provide. We value your privacy. We are not requiring you to "like", "share" or "comment" publicly. However, we do encourage you … [Read The Rest of This Article...]
*Article appeared in our 3rd Quarter 2011 Newsletter.
Kristy P. Kulski-Ingram
People tend not to know what to say when they find out about Elijah – and I understand, I would feel the same way, afraid of saying the wrong thing. Sometimes I am met with awkward silence, other times it is simple confusion and then the … [Read The Rest of This Article...]
*Article appeared in our 1st Quarter 2013 Newsletter.
The 4p- Support Group’s mission is to improve the access to 4p- information to parents, family members, and care providers of individuals who have a 4th chromosomal abnormality, most commonly Wolf-Hirschhorn Syndrome. We are the only organization with this mission that is recognized by the … [Read The Rest of This Article...]
*Article appeared in our 3rd Quarter 2012 Newsletter.
The week before our trip to Indianapolis to represent the new Clinical Partnership between Lineagen and the 4p- Support Group, I was apprehensive. Megan, Rena and I had filled our days with final preparations by reviewing 4p- Biographical Forms and pouring through countless stories, photos … [Read The Rest of This Article...]
*Article appeared in our 4th Quarter 2012 Newsletter.
Message from Jared Hiner, Founder of Kammy’s Kause
and our First Recipient of the 4p- Innovator Award
First and foremost I would like to thank each and every one of you that attended or contributed to this year's Kammy's Kause. Because of you we had our most successful … [Read The Rest of This Article...]
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...]
*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...]
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...]
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...]
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...]
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...]
Beyond the Textbooks for Wolf-Hirschhorn Syndrome: Lessons for Prenatal and Pediatric Genetic Counselors
Co-hosted by NSGC’s Prenatal Counseling & Ultrasound Anomalies and Pediatric & Clinical Genetics Special Interest Groups (December 11, 2012)