This holiday season consider our bravelets, a unique gift, for your wife, husband, daughter, son, family member or friend who is affected by 4p-. There are several styles to choose from and are embellished with our blue color.
They are designed to be a reminder to be brave in the toughest of times! Plus, $10 per item purchased is donated back to the 4p- Support Group which makes them a gift to feel good about giving.
In order to spread more awareness about our event and 4p- syndrome, we are opening up the artwork, created by individuals who have 4p- syndrome, for both onsite and offsite bidding!
Even if you will be attending Kammy’s Kause in person this year, we highly encourage you to place your bids online if you have a SmartPhone. Once you’ve placed your bid amount, you will be notified if you’ve been outbid. You can also set a maximum bid amount and allow the site to submit proxy bids for you that way if your lowest bid is outbid by another bidder it will increase it for you up to your maximum bid amount. Onsite and online bidding will take place on Saturday August 29th beginning at 12:00pm EST and ending at 9:00pm EST. So be sure to sign-up and bookmark our auKtion page:
Let the bidding begin!
The 4p- Support Group is currently hosting a fundraising campaign to raise funds for the 2016 4p- National Conference. Join us, and Dave & Busters, to make the 2016 National Gathering the best yet!!
The 4p- Support group is selling $10 and $20 game cards to be used at any Dave & Busters nationwide. 50% of the proceeds of all game cards sold will go the 4p- Support Group. For more info contact Denise at: firstname.lastname@example.org
Dave & Buster’s has over 70 exciting restaurants/arcade game venues throughout the US and Canada. Click here to find a location near you: Dave & Buster’s Locations
As a continued tradition at Kammy’s Kause, we will be remembering and celebrating individuals with 4p- who have received their wings. The annual memorial ceremony at Kammy’s Kause will take place on August 29th. 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.
To enroll, click here.
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.
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.
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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)