July 21st during our 2012 National Conference

American Legion Park, Fortville, IN

Information & maps available at conference

Saturday, July 21 – 2:30p – 7:00p

2:30p Depart hotel
3:00p Arrive at festival
3:00p – 5:00p Festivities
5:00p Cookout
7:00p Depart for hotel

Dinner and transportation will be provided to conference attendees.
Kammy’s Kause is an outdoor concert event featuring live music, food, and an interactive kids zone.
We will also be having a Butterfly Release Ceremony in memory of deceased 4p- children.

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We want you to know about an opportunity to participate in a research study.  Our group is collaborating with Drs. Amy Calhoun and John Carey at the University of Utah, co-chairs of our Scientific Advisory Board.

As you know, most people with 4p- have significant growth problems.  Therefore, the usefulness of standard growth charts for people with 4p- is limited.  Plotting growth points on an appropriate growth chart is a key piece of well-child care, but using typical charts for patients with 4p- may fail to alert his or her care provider to a growth-related health problem, such as a hormone deficiency.  Specific growth charts for people with other genetic syndromes, such as Down syndrome and achondroplasia have proven helpful to their care providers.

The purpose of our study is to collect growth data from persons with 4p-/Wolf-Hirshhorn syndrome in order to construct growth charts specific for 4p- / Wolf-Hirschhorn.  All data from our members is extremely useful, even if the child or adult with 4p- has passed away.

As a member of the 4p- Support Group, we felt you might be interested in participating in this approved study.  Participation information on this study can be found on our website www.4p-supportgroup.org, including the consent documentation and instructions for submitting the growth data if you are interested.  Requesting information on the study or agreeing to be contacted about the study does not enroll you in the study.

Below is a presentation given by Drs. Carey and Calhoun during the 2010 4p- National Conference discussing the growth research project and answering questions from parents.  *We apologize for the background noise.  We always allow our parents to bring their children into the presentations during our conferences.

Learn more and enroll in the growth research.

Learn more and enroll in the growth research.

We’re excited to announce a fundraiser with The Jewelry Chicks.

Money raised through this fundraiser will be used towards our 2012 National Conference, specifically towards the sibling activities we have planned.  Mention code CONF when you place your order.

These custom made necklaces and keychains

are receiving rave reviews within our community!

The Jewelry Chicks specialize in made to order jewelry.  Beads, Bezels and Metal Stamping pieces made to your preference.  See one of their pieces that you like- but would prefer another color, style or length- let them know…The Jewelry Chicks are here to make your vision for the perfect jewelry piece come to life.  If your child has 4p- but does not have Wolf-Hirschhorn Syndrome they can stamp whatever you want, whether it’s 4p- Syndrome or your child’s specific deletion.  The sky is the limit with these pieces!

Necklaces are $28.00 and can be made in silver or copper.

$5.00 of each necklace sale will be donated to the 4P- Support Group.

Keychains are $25.00.

$4.00 of each keychain sale will be donated to the 4P- Support Group.

The best way to place an order is to send an email to thejewelrychicks@yahoo.com and mention the code CONF.  They will take care of finding out exactly what each family is looking for and how they would want their items personalized.  They will also handle payments from the families and shipping to the families.  At this time, they are unable to ship outside of the US.

More information about The Jewelry Chicks and more pictures can be found at

http://www.etsy.com/shop/TheJewelryChicks and https://www.facebook.com/pages/The-Jewelry-Chicks.

Do you want to get really close to some amazing animals? Would you like to touch some of your favorites? Then join us on a Silly Safaris Friday, July 20th during our 2012 National Conference.

Amazon John, Coyote Chris and all of our other funologists are lively, interactive    characters so unique and refreshing you will be amazed how they appeal to all  ages.   A Silly Safaris Show is a high-energy and zany theatrical performance.  We are    the most interactive performers around.  You’ll see all the animals and everything  they do.  Children and volunteers join them on-stage in games and various fun  activities.  Everybody is entertained and engaged in the action.  Each animal, each  game, every interaction teaches something simple about nature and the world  around us.  Children crave to be close to animals and you never know what to  expect when you go on safari.  You’ll be having so much fun you won’t notice that  you’re learning facts about animals.

Silly Safaris Shows bring a variety of animals–mammals, reptiles, birds, amphibians, and yes, BUGS. Our approach is warm, inviting, and playful which leads to effective and rewarding entertainment. Our philosophy celebrates the children who help us on stage and the audience joins in the fun.  Become a lizard, smell a ferret, hypnotize an alligator, and hug a rabbit.  Everyone is entertained together as lasting positive memories are created.  The trained animals always offer their best and every audience responds as they share in the gift of interactive play.  Join Amazon John, Coyote Chris or one of our other funologists on a Silly Safaris soon — it’s fun for everyone and a wonderful experience to share with friends, family, and animals.

Prior to the conference, I had only briefly met one other child with WHS, and my husband had not met anyone, and the one thing we were most hoping to come away from the conference with was a “snapshot” of what our son’s future would look like.  I was unprepared for the emotion that overcame me when I walked into the banquet room the first night to see so very many precious faces of people who were loved enough by their families to be flown or driven there for the weekend.  Most of the families we talked with over the next couple of days were so encouraging and positive.  It really caught me off guard to be perfectly honest.  I don’t know if I was expecting some sort of survival mode or what exactly, but the upbeat spirit of the families is what I think of first when friends ask me, “How was the conference?”

We saw a wide range of physical and developmental abilities, and although it was great to see the reality of this syndrome, the reality is that the developmental abilities are quite varied.  So although we were hoping to get a snapshot of our son’s future, we instead got a snapshot of our own.  I am much more confident that we can handle this, and not just handle it but continue to thrive as a family.

*Article appeared in our 3rd Quarter 2010 Newsletter.