2016 4p-/WHS Awareness Day

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We are so excited to share this with you all!!! This year we have created our social media profile picture templates for International 4p-/Wolf-Hirschhorn Syndrome Awareness Day using this one-of-a-kind work of art painted exclusively for the 4p- Support Group by the amazingly talented artist, Miranda Thomas.

We asked you to provide us with a word that best described your child with 4p-, as well as their favorite color. We were thrilled with the responses we received. Miranda took the list we compiled to create this masterpiece which captures many of the attributes of persons diagnosed with 4p-/Wolf-Hirschhorn Syndrome. Sit back and read through all the words, and take in the beauty of all the many colors!

****This one-of-a-kind painting on canvas is up for AUCTION**** 

 

We are working to transform this painting into posters that you can purchase and hang up in your child’s bedroom, your office… whatever you want to be inspired by the spirit of 4p-.

If you live in the Indianapolis area, we encourage you to visit Miranda at Painting with a Twist in Carmel, IN. Not only does Miranda love creating art, but she also is passionate about helping others discover their own artistic talents, in a fun, friendly, no-pressure environment. So stop by sometime and take one of her classes. You can also meet Miranda in the art booth area at Kammy’s Kause.

 

Research Participants Needed!

Exciting News! 4p- Support Group has partnered with researchers from the University of Utah and Lineagen, Inc. to evaluate the effectiveness of different seizure treatments for people with WHS. Approximately 90% of people with WHS have seizures. While there are guidelines for seizure treatment for people with other genetic conditions, such guidelines do not exist for WHS.

Press Release!

Lineagen Announces Identification of New Genetic Region Associated with Seizures in Wolf-Hirschhorn Syndrome.  Click here to read full press release and research article.

 

Rock What You Got T-shirts

 

 

 

 

 

 

 

 

 

 

 

Join the “Rock What You Got” movement!

Shirts are $15/each and 50% of the proceeds from each sale will go directly to our support group! 

Order yours now!

Bravelets

 

 

 

 

 

 

 

Introducing our new Bravelets!

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.

GO TO BRAVELETS

 

2015 Kammy’s Kause Online Art AuKtion

 

 

 

 

 

 

 

 

 

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:

http://www.32auctions.com/kammyskause2015.

Let the bidding begin!

 

Dave & Buster’s Fundraiser

 

 

 

 

 

 

 

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: denise@4p-supportgroup.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

 

Dave & Buster’s Game Card Options:

2016 Memorial

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 20th.

We also have plans to include a memorial during our 2016 National Conference.

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.

Your Name (required)

Email (required)

Phone Number

Address (required)

City (required)

State/Providence (required)

Zip/Postal Code (required)

Country (required)

Child's First and Last Name (required)

Date of birth (required)

Date of death (required)

 

Online Patient Registry Portal Now Open!

The International 4p- Patient Registry online portal is now open for enrollment!

To enroll, click here.

Announcement: International Patient Registry Underway!

Dear families and friends in the 4p- community,

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.

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