The International 4p- Patient Registry online portal is now open for enrollment!
To enroll, click here.
To enroll, click here.
As a continued tradition at our National Conference and also at Kammy’s Kause, we will be remembering and celebrating individuals with 4p- who have received their wings. During the National Conference, we will have a table set up to showcase the names of our angles so families can pay their respect. The annual tribute ceremony at Kammy’s Kause will take place on August 23rd. To ensure we included your child or loved one please fill out the form below. If you have submitted your child’s name in the past, you do not need to resubmit their name. You do not need to attend the ceremony in order for us to honor your loved one’s memory.
Please choose the HD option at the bottom right corner of the video screen which appears after clicking play!
We are thrilled to announce a very important step in advancing the research and care of individuals with 4p-. After many years of hard work from the 4p- Support Group, an international patient registry is officially underway. A patient registry is an online database that stores important information in a systematic way and can be queried into data …reports. This will make a huge impact on our community because we will not only be able to define 4p- more accurately, but also answer the questions many of us have, such as, “What percentage of affected individuals have seizures, sleep disorders, or renal failure? What treatments work best for seizures, sleep difficulties, or ADHD?” By defining the syndrome more effectively, we can better educate our families and in turn the medical community about 4p-. The patient registry’s long range goal is to determine effective treatments to provide a better future for all our loved ones with 4p-.
Participation will be completely voluntary and will begin at our national conference in Harrisburg, PA this July. At the conference, we will have a special session about the registry, where we will answer any of your questions. We will also be posting updates on Facebook. By participating in this registry, families will play a pivotal role in helping our community, medical professionals, and potentially researchers gain a better understanding of this complex syndrome. Participating in the registry is the single most important thing families can do to help build a better future for those affected by 4p-. We hope you are as excited as we are. Thank you all for your support.
Many of you have already ordered and received the new 4p-Support Group T-shirts. So now it’s time to start wearing them! Our goal is to spread awareness and support for 4p- and the best way to do that is YOU and your “Unique & United” T-shirts. So get your shirts on and get out there! Take a picture of you, your child, or the whole family sporting your snazzy new “Unique & United” T-shirt.
Where can you wear your shirts? Well whether you’re headed to the Grand Canyon or the grocery store, to the Coliseum or the cardiologist, white water rafting or the water sprinkler outback….the possibilities are endless.
Represent 4p- across America and around the world!
The most “unique” photo will win a prize!
Submissions must be received by Dec. 15, 2013.
There will be 3 contest winners:
1st prize- $200 Visa gift card
2nd prize- $100 Costco gift card
3rd prize- $50 Visa gift card
If you don’t have a “Unique & United” T-shirt yet, no worries! T-shirts are available in adult sizes, youth sizes, and onesies for $13.00 through our online STORE. Note that XXXL Adult is priced at $15.50.
*By submitting your photo, you are authorizing use of your photo by the 4p-support group. Click here to read the official contest rules and conditions before submitting your entry below.
A collage of the photo entries will be displayed during our
2014 National Conference!
We received 2 photo session gift certificates to be used to raise funds for the 4p- Support Group, a 501c3 non-profit organization, in memory of AJ Garner who was diagnosed with Wolf-Hirschhorn Syndrome. We have placed one of the gift certificates on eBay to allow anyone to bid on it. Please note, the photographer is located in Woodstock, IL and can travel to all of McHenry, Kane and Lake counties. The value of the session is $250 each certificate. CLICK HERE TO GO TO THE EBAY LISTING
The money raised for this certificates will be used to help cover the costs of providing a SibShop at our 2014 National Conference. The needs of 4p- siblings are often overshadowed by the intensive focus on the 4p- child since they have the most obvious physical, mental, or emotional needs. The purpose of SibShop is to allow these siblings to be able to meet new friends, reconnect with old friends, play and have fun, interact and have discussions on what it is like to have a sister or brother with special needs. This is a very important session and can make a positive impact on a sibling’s life.
We are offering the other gift certificate to any individual who has been diagnosed with 4p-. The certificate can be used to celebrate a birthday, senior pictures or pictures with their siblings and parents. In exchange we ask that you allow us to post one of your photos from the session in our newsletter and write an article to include with it. The article can written by their sibling about having a brother or sister with 4p- or a parent can write about anything related to their child with 4p-. Certificate expires April 1, 2014. If you are a 4p- family interested in this opportunity, please contact Amanda Lortz at email@example.com on or before September 30, 2013. In your message explain how you intend to use the gift certificate and include your 4p- child’s name and age. Please keep in mind this photographer is located in Woodstock, IL and you must be able to travel to her or a location within the above mentioned nearby counties in IL. The winner will be chosen by a random drawing and announce on on before October 4, 2013.
Kammy’s Kause began with one father’s desire to spread awareness about his daughter’s genetic condition called 4p-. This summer, August 23rd & 24th, Kammy’s Kause will celebrate 10 years of restoring hope and transforming lives across America in ways we never could have imagined. There is something unexplainable that happens within us when we reach out and help someone whose needs are greater than our own; this is the heartbeat of Kammy’s Kause. Our lives are like ponds and our actions are the rocks that we toss into those ponds – rocks that create ripples which are felt and appreciated by people in places we never believed we could reach.
The continued support from our community is imperative and YOU have the opportunity to stand up and use your voice to create a ripple by supporting the only fundraiser of its kind in the United States, Kammy’s Kause.
Two days of music, food and friends for the Kause. Raising money to fund awareness, research and support for families with children diagnosed with 4p-, also known as Wolf-Hirschhorn Syndrome (WHS). To date, we have raised $115,000 which has been donated directly to the 4p- Support Group.
Admission: $5.00/Per Person
Friday, August 23rd:
6:00PM = Gates Open
8:00PM-9:00PM = Chad Mills & The Upright Willies
9:20PM-10:20PM = Landon Keller
10:40PM-11:40PM = Jenn Cristy
12:00AM-?? = Blue Moon Revue
Kammy’s Kause Akoustic Korner (side stage) = Alan Long & friends
Saturday, August 24th:
11:00AM = Gates Open
12:00PM-7:00PM = KAMMY’S KID ZONE
2:30PM = Arrival of KAMMY’S RIDE
3:00PM = 4p- FAMILIES
3:30PM-4:30PM = 350 West
4:00PM = KAMMY’S KORNHOLE
4:50PM-5:50PM = Dell Zell
6:10PM-7:10PM = Cory Williams
7:30PM-8:30PM = bleedingkeys
8:50PM-9:50PM = Audiodacity
10:10PM-11:10PM = Breakdown Kings
11:30PM- ?? = Twin Cats
Kammy’s Kause Akoustic Korner (side stage) = Alan Long & friends
*Times are subject to change.
*Stay tuned for more details about Kammy’s Ride, AuKtion, Kid Zone, Kornhole and much, much more!
SPECIAL THANKS TO OUR SPONSORS:
Clear Channel, X103, Q95, WNDE (1260AM), Hoosier Park Racing & Casino, Irving Materials Inc. (imi) and Gene B. Glick
*Sponsorship packages are still available – please visit www.kammyskause.org!
“There is something unexplainable that happens within us when we reach out and help someone whose needs are greater than our own; this is the heartbeat of Kammy’s Kause.”- Jared Hiner
Kammy’s Kause is a 4p- Support Group sponsored event. All proceeds go directly to the 4p- Support Group which is a registered 501(c)3 charity organization.
For more information please go to www.kammyskause.org.
The majority of pictures used are courtesy of Photos by Jami.
We do not own the copyrights to the background music. Song by Sugarland titled Stand Up from their album The Big Machine.
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 share this on your Facebook and Tweeter accounts to help us spread the word about 4p- & Wolf-Hirschhorn Syndrome and our new awareness T-shirts!
Don’t want to wait to see if you win before getting one of these T-shirts? Go to our 4P- Store and place your pre-order. T-Shirts will be mailed out in mid-June! Order yours now!
CONTEST ENTRY IS NOW CLOSED.
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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)
Buy using this link to order Signing Time Products, 15% of your order will be donated to the 4p- Support Group. You must use this link in order for us to receive the donation. So please share, share, share! Signing Time Video Clips