History

A Brief History of the 4p- Support Group

In 1984, Becky Richardson started contacting parents who had children with a deletion of the 4th Chromosome. She made a bio form and sent them out to those she came in contact with. The bios were shared among those parents. Becky maintained a list of names and addressees for many years and is still sought out by many for her knowledge and information.

In or about 1991, Brenda Grimmett started a newsletter, sending to those parents of children with 4p-. The newsletter was sent out monthly containing articles and information of interest to those parents. Brenda continued the newsletter until 2001, though it changed from monthly to quarterly due to the increase of families and the costs of sending.

In August, 1992, Valerie Dillavou organized and facilitated a meeting of 25 families in Des Moines, to meet and discuss their joys, sorrows, what their children were able to do, what kind of supports were out there in the wide world, and just to know that they are not the only one.

The University of Iowa donated some financial help, and a hotel in Des Moines gave a discount and three free rooms for the use of a family that would not have been able to attend if this had not been offered. Bios were updated and put in a binder for each family that was able to attend. Wal-Mart discounted the costs of the binders. The meeting was a tremendous success.

The second Reunion was held in Asheville, North Carolina, on July 24-26, 1994. There were thirty-three families in attendance from all over the country, though more from the eastern U.S. Friday was the day of arrival, registration, and getting acquainted or re-acquainted. One of the questions a man asked when he registered was: “Is this going to be SAD?”

In case you wonder, it was not sad, though some tears were shed as people shared some emotional experiences. It was more like a family reunion, like people meeting relatives they had never met before, but who shared a common bond, the love of a child with an unusual diagnosis. Our first President was Tim Rockwood of Vermont; Vice President, Sara Wood of Florida; Secretary, Brenda Grimmett of Ohio; and Treasurer, Lori Stepaniak of Michigan.

On July 19-21, 1996 we met in San Francisco. Hosts were Ken and Elisabeth Sawyer. The Clarion Hotel was wonderful to us. They furnished stuffed animals for all the kids. Sherry and Larry Bentley’s family helped with the children, painting t-shirts, wood crafts, and paper crafts. A business meeting was held, officers for the coming two years were: Larry Bentley, President; Trish Miles, Vice President; Kathy Lynch, Secretary; and Sharon York, Treasurer. Some parents did discussions on different issues: legislation, nutrition, medications, etc. About sixty families attended.

On July 17-21 1998, the Sjodin and Zuehlke families hosted the Gathering at the Holiday Inn Select in Bloomington Minnesota. We approved By-Laws and Dues for membership. Next was to become incorporated. New Officers elected were: Larry Bentley, Past President; Sharon York, President; Chris Kleimola, Vice President; Shari Zuehlke, Secretary; and Steve Sjodin, Treasurer. There were Regional Directors elected by their regions of which we have six. Several workshops were given and lots of networking. About sixty families attended.

The 2000 Gathering met in Hartford, Connecticut at the Crowne Plaza Harford Downtown Hotel, on July 21-23, 2000. The Gordon’s and Bowley’s were the hosts. A number of workshops were presented and Dr. John Carey was the keynote speaker at the luncheon. Dr. Carey also did a workshop and then mingled and talked on a one to one with many parents.

Officers elected were: President, Sharon York; Vice President, Chris Kleimola; Treasurer, Steve Sjodin; and Secretary, Brenda Grimmett. A Bylaw Task Force was formed to go through the membership section of the Bylaws. The 2002 Gathering would be held in Portland Oregon with the Bentley and York families hosting.

The 2002 Gathering was held in Portland Oregon with the Bentley and York families hosting. The revised By-laws were passed. Tom Bowley was elected as President for the 2002-2004 term. About 30 families attended. A play area with lots of things for the children to do was overseen by Sherry Bentley and her family, as well as help from other children’s relatives. A special award was given to Becky Richardson for her work in making this organization a reality.

The 2004 Gathering was held in Nashville Tennessee and was hosted by Paul and Marilyn Hutchinson.  More than 40 families, representing 24 states, attended the Gathering.  For the first time the Gathering officially began on Thursday evening with a Newcomer’s Welcome and was immediately followed by a Meet-And-Greet time.  Friday morning Dr. Oliver Quarrell from Sheffield Children’s Hospital and Professor Peter Hammond from University College London spoke regarding the research study they are involved in and how those present could participate.  During the business meeting a National Office was established and the Board hired an Executive Director.

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Trent and Penny Engler hosted the 2006 Gathering in Denver, Colorado.  63 families attended the Gathering.  For the first time the group was able to use donations raised by Kammy’s Kause to help provide financial assistance to 7 families so they could attend the Gathering.  Dr. Sarah South presented her research on detailed characterization of cytogenetic abnormalities, specifically translocations, which many parents in the group had participated in.  Dr. Quarrell and Dr. Hammond presented on their preliminary research material collected on 3D imaging they collected from the group during the 2004 Gathering in Nashville.  Dr. Carey had a discussion with Board Members to encourage the group to begin transitioning from wording our National Gatherings to National Conferences as a step towards seeking out grants and conference funding in the future.  He also expressed his desire to offer one-on-one parent-doctor information exchanges similar to those SOFT offers at their conferences and to have the 2010 National Conference in Salt Lake City, Utah so he could line up the medical professionals that would participates in the exchanges.  Friday night the group attended a Colorado’s Rockies game at Coor’s Field and was greeted by a welcoming message on the score board.  During the business meeting Jared Hiner was presented with a plaque of appreciation for his dedication to the group by raising donations through Kammy’s Kause, a 2 day outdoor music festival he organizes every year.  The Engler’s arranged for a live band to perform after the family dinner on Saturday night which got both parents and children up out of their chairs and on the dance floor.

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The 2008 National Conference was held in Herndon, VA (Washington, DC area) and was hosted by the Fallgren Family.  Once again 63 families were in attendance.  The 4P- Support Group sponsored the first ever Wolf-Hirschhorn Syndrome scientific workshop that was held on Thursday morning and lead by Dr. Carey.  About a dozen doctors from all over the world attended the workshop and presented their research to one another to develop a research agenda for Wolf-Hirschhorn Syndrome.  As a result of this collaboration and exchange of information, the November 15, 2008 American Journal of Medical Genetics Part C was dedicated to Wolf-Hirschhorn and the 4p- related syndromes.  During the business meeting there was a lengthy discussion regarding the need for a more professional looking logo that the group could copy right.  A committee was formed and they created the logo we use today.

The 2010 National Conference was hosted by Tad and Sarah Tidwell.  51 families were able to attend and the 4p-/WHS ages ranged from 2 months to 60 years.  Dr. Carey’s envision of a parent-doctor information exchange was fulfilled.  Over a half dozen geneticists, several genetic counselors, a Neurologist, a Psychologist and a seating and mobility specialist participated in one-on-one discussions with parents for the opportunity to learn more about WHS/4p-.  At the end of Dr. Carey’s keynote address on Friday morning, Dr. Amy Calhoun presented preliminary growth information collected from Bio forms members of the group had submitted and Dr. Carey and Dr. Calhoun expressed to the group their need to receive more so they could continue to expand the data so it can be published.  During the family dinner on Friday night, the group presented a certificate of appreciation and a gift basket to Wendy Trout, who needed to step down as the Executive Director, to thank her for her time and dedication to the group.  The Tidwell’s arranged for Bonne Nuit, a local band, to perform live music for the group and it was a very fun filled evening for all.  During the business meeting the membership had discussions on newly formed membership and fundraising committees, incorporating Kammy’s Kause under the group and expanding the number regional gathering locations.  On Saturday evening there was an ice cream party and a magic show.  On Sunday morning many of the families attended a live broadcast of Music and the Spoken Word at the historical Mormon Tabernacle.

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In 2012 the 4P- Support Group will be celebrating 20 years of gathering together.  The National Conference will be held in Indianapolis, IN on July 18th to July 22nd, hosted by Tom and Susan Bear.

We hope to offer one-on-one parent doctor exchange clinics again as an opportunity for both parents and doctors to learn more about WHS/4p-.  We have already begun a fundraising campaign in order to raise enough funds to bus those in attendance to and from Kammy’s Kause on Saturday for a very unique conference experience.  This will be a conference you do not want to miss!

The 2014 Conference will be in Pennsylvania, hosted by Jim and Jenn Shellenberger.

Be sure to check out our YouTube page as we have several video interviews with parents and 4p- children from the 2006 National Conference!  http://www.youtube.com/4psupportgroup

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