Signing Time Pre-Turkey Tuesday 40% Off Sale – 1 Day Only!
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 firstname.lastname@example.org 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.
As a continued tradition at Kammy’s Kause, we will be having a Memorial Ceremony to remember and celebrate our 4p- children who have received their wings. The ceremony will take place on August 24th at Kammy’s Kause. To ensure we included your child or loved one please fill out the form below. You do not need to attend the ceremony in order for us to honor your loved one’s memory.
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.
*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 dumbfounded direct response, “What happened?!” Because for many people, losing a child is an experience so rare that it is unthinkable that for many it’s simply incomprehensible.
I held Elijah in my arms for a short 7 ½ weeks. For all the brief time, his life and person were and continue to be immense to behold. It took having him for me to understand that Wolf-Hirschhorn, and other syndromes like it, were not personality traits, that knowing Elijah was like knowing sunshine. In a way diverging from his life, his death has held a deep and abiding impact on my very soul. For anyone who may read this after their own loss, my heart sincerely aches for you. I know there have been losses in the support group recently and I wish so dearly that no parent has this experience. While I think every parent fears it, those of you who have nurtured your children through the medical scares of 4p- each day have a special relationship with that fear. I will tell you honestly that I have no tales of saving inspiration. But I know that I only learned that each morning I had to get up, and that I needed a reason. My reason sometimes was my husband. But many mornings it was because I made a promise to Elijah, as I held him quietly knowing my moments with him were rushing away. I promised my son that I would be better because of him. So through him, I was able to find the strength to get up. Don’t ask too much of yourself, just ask that you take the next step. One foot in front of the other.
When people find out about Elijah, what I really want them to say is “Tell me about your son.” Because I still beam when I think about him, I could spend so much time talking about who Elijah was – his sweetest quiet smiles, his wise old eyes. And who his was to me – Elijah was my druid boy, he seemed to understand everything around him and take it all in with an otherworldly calm. Even now, over two years after losing him, I am still the proud gleaming first -time mother I was the moment he popped into the world, even if I cannot hold him with these arms. My son lit up a room; I have never seen anyone draw a crowd like him. His inner calm seemed almost transcendent of the world around us. Elijah gave me so much during his stay, he did things I was told would not be possible – the first of which was to be born. How such a young infant could cast such an aura of wisdom and serenity simply amazes me; and that is what Elijah did, was amaze me every day.
Once you have seen the sun, only another star can ever touch the darkness the same way again. Today I have Elijah’s 8 month old little brother Marcus. It is because of Elijah’s life, because of losing him, I am a better mother, and I am a better human being. And my little Marcus gets double love. It has taken some time to understand exactly what I was promising Elijah that day and I think that it will be a life-long endeavor of discovery. But in this, when I take Marcus into my arms, I know that I am keeping my promise, that Elijah is right there in all the love that I pour.
Remember when I held you aloft in my arms?
And there I kissed your neck and cheeks
And laughed my joy upon the air around us
Then held you high so you knew how to fly
And fly you did, right through my heart and taught me how to live
I can hear the words your eyes speak
And still giggle at your kicking feet
Your tiny hands over my fingers
I can hear the wisdom your heart speaks
Ah, how I love you my little one.
How beautiful those days in the sun.
*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 Internal Revenue Service as a 501(c) (3) charity.
We are more than just a group of parents that talk about our children. We are a support network in the truest sense of the word. Our bi-annual national conference attracts families from around the country, medical professionals from around the world, and provides a one of a kind experience to help educate, share, learn, and grow from. We know that at this conference we are putting together the best concentration of 4p- experts in the world…and those experts include the parents and family members we support. We also sponsor and organize bi-annual regional gatherings that help facilitate communication and information sharing among parents and care givers. It is the bonds that are formed at the national conference and regional gatherings that provide inspiration for continuing the Support Group’s mission. It is because of this, that the Board of Directors sets aside funds at each conference to provide financial support so as many families as possible are able to attend.
Our mission includes education and advocacy to the medical community. This certainly happens at our national conference, but this also occurs throughout each year, and is an ongoing focus for our members. A few examples of our recent advocacy and education include the genetic counselors webinar (archived on our website), attendance at the 2011 American Society of Human Genetics/International Congress of Human Genetics annual meeting in Montreal, Canada, and our upcoming attendance at the 2013 American College of Medical Genetics and Genomics annual meeting in Phoenix, AZ.
Finally, we have formed the premier Scientific Advisory Board, chaired by Dr. Amy Calhoun, MD of the University Of Utah School Of Medicine. Through the work of the Support Group, and the Scientific Advisory Board, we have developed a working relationship with Lineagen (www.lineagen) that lead to a research study conducted at the 2012 national conference that resulted in 4p- individuals receiving chromosomal microarray analysis at little to no cost.
Your annual membership dues to the group help us achieve our important mission and support our unique and amazing community. If you have already paid your annual dues, on behalf of the Board of Directors, thank you. If you haven’t, please consider joining our group today. Payment can be made on our website, or mailed to the address below. Since we are a 501(c) (3) recognized organization, your membership dues, and donations to our group, are tax deductible.
I encourage you to visit our website (www.4p-supportgroup.org) or Facebook page to see all of the activities and projects the group is currently involved in. I have no doubt that you will be impressed!
Thank you for your support!
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)