The Chromosome 9pminus Network is a nonprofit, parent-based support group with a mission to improve the lives of families affected by 9p Deletion Syndrome by connecting families, offering knowledge, and improving access to information about this rare genetic disorder.
History of the Network
1968 – 1972 : Dr. Alfi did the original research to study Monosomy 9P (9p-). His research was based on children, 4 of whom were institutionalized.
1984 : Jon Storr of Ohio began searching for other 9P- families through letters to genetic hospitals. Once families were located, they started writing letters to share information about their children and the syndrome.
1987 : The Udell family of Nevada became part of the group. They were family #11.
1988 : Beverly and Jim Udell took over the organization of letters and made it an annual event. They thought they were high-tech because Beverly had to purchase an electric stapler to keep up!
1989 : A bank account was opened in Nevada to accommodate costs for the group, under the name “Support Group for Monosomy 9P”. Aluminum cans were recycled to pay for postage. The first pictures were shared in the annual 9P- Update Package. For many families, this was the first time they were able to see what another child with 9P- looked like.
1992 : Dr. Carol Crowe of Ohio, a Geneticist conducting research on 9P-, joins the group. We are now up to 42 families!
1995 : We became an international organization with the addition of families from Canada and Puerto Rico. We now have 70 families, and Beverly sends the letters out for printing instead of copying them by herself. Where does the money come from for all of this? It must be GOD!
1996 : The “Support Group for Monosomy 9P” registered with the State of Nevada as an official non-profit organization. We can start fundraising! Due to this, we appointed Officers and Directors to govern the group.
1997 : The First Gathering of 9P- families occurred in November at the Karnes/Nydam home in Southern California. What was originally planned as a small Saturday backyard barbeque drew 15 families from all over the United States. Dr. Crowe was in attendance to further her research as were several newspaper reporters. As the kids with 9P- and their siblings played, their parents laughed, cried and shared stories. This historical event showed us that we needed to have more of these events. We call them “Regionals” because our intent is to get to as many different regions as possible to try to get as close to as many families as we possibly can. We have now added families from Ireland and Israel to our roster.
1998 : Our name was changed to “Chromosome 9P- Network” to make it easier for families and caregivers of 9P- individuals to find us. The next Regional moved to the opposite coast of the US, to Massachusetts, at the home of the Young’s. The June event brought 26 families from 14 states and Canada. An extra day was added to the meeting, and it was reported about in 4 different newspapers including the Boston Globe. A web site was built in July. After almost a year of work, the IRS granted us the status of a 501(c)3 organization in August. A Financial Committee was appointed to oversee the group’s finances due to 2 large fundraisers that were held by Barbara Young of Massachusetts and Chuck and Lou Ann Kidd from Mississippi. Southwest Airlines donated airline tickets for a raffle. A family from Australia was added and we now have over 100 families on the roster. The definition of high-tech now means several computers, e-mail, a copy machine and many volunteers at the Udell home. The 4th electric stapler has burned up!
1999 : The Regional is held on the southern tip of the US, in San Antonio, Texas. It was hosted by the Simmons and Rosenheim families in March and brought 19 families from the US and Canada. Regionals are now up to 3 days. Forget being able to be in a backyard, we had to rent out a park. In April, the Kidd family announced that their Christian Concert will be an annual event to help raise money for our group. We have added families from all over Europe. Help! – Beverly doesn’t speak German. We now have more than 130 families on the roster.
2000 : The 3-day Regional this year will be right in the center of the US – Omaha Nebraska. Mark and Becky Siepker will host the event at Mahoney State Park in June. We have 36 families coming from 5 different countries. The group hopes to start a quarterly newsletter this year, and we now have 165 families on the roster.
2001 : Southern hospitality greeted the 9p- families as the 5th annual Regional brought us to Alabama in May. The Regional hosting families threw the 1st 9p- Golf Tournament to raise money for the event. We all looked marvelous at the conference in our matching 9p- t-shirts. We had about 250 people attend the event, including 2 families from Europe and one from Israel. The e-Group has taken off with 70 families sharing information daily via an Internet e-Group. This group has clearly become one huge international family – all bound by that 9p- blood. The Network’s main headquarters relocates to Pine Valley, Utah, at the end of the year.
2002 : Pennsylvania was the home of the 6th Regional in June, hosted by the Yahnke family. A total of 44 families attended, making this the largest Regional. Dr. Crowe and Dr. Schwartz attend and present to the parents. The Network now services approximately 200 families, with constant requested for 9p- information from parents, physicians, teachers, therapists and college students.
2003 : The 7th annual Chromosome 9p- Network Regional moved full circle back to California. A total of 35 families attend the June event in Palm Springs, hosted by the Karnes / Nydam family! Dr. Crowe attends and presents research-to-date to the parents. It doesn’t seem to matter where we hold the event – families come from all over the world to attend! The Board of Directors transitions from an advisory role to assume the leadership role. Denis Lussier and Donna Murphy join Penny Yanke on the Board of Directors.
2004 : After 16 years, Bev Udell relinquished her role as the Network President. For 16 years, she guided the group from a time when there were only 11 families to our current number of over 200 families. The amount of time and energy Bev devoted to the 9p- “family” is beyond description. New members of the Board of Directors are appointed: Patty Duffy-Krauspe, Stephanie Marquis and Deb Reynolds. Annual update letters are published for the first time in a beautiful spiral yearbook!!! Dr. Crowe steps down and Dr. Schwartz relocates to Chicago taking the 9p- research project with him.
2005 : The state of Utah marks the home of the 8th Regional in June, hosted by the Udell family. A total of 40 families make the journey for this event. Dr. Schwartz attends and provides parents with an update on the research, and the Board of Directors describes the new organizational structure to parents. The Network address is formally changed to Stanley, ID. Penny Yanke’s term expires. Formal procedure manuals are created for the New Family Contact Committee, Fundraising Committee, Yearbook Committee, Regional Hosting Process, eGroup Committee and the Board of Directors Manual.
2006 : The Board of Directors holds a retreat in Chicago to welcome new members of the Board: Sally Boston, Carrie Givens, Oney Reynolds and Sally Whelan. Manuals are distributed and reviewed in detail. Denis Lussier’s term expires (retains position as Yearbook Editor).
2007 Terms expire for Stephanie Marquis (retains position on Contact Committee); Donna Murphy (retains position as Yearbook Editor and owner of the Birthday Card program); and Deb Reynolds. Dr. Alfi establishes a fund to reward the sensitivity of people with 9p-: the “Love Award” program is born. In an effort to attract volunteers to host a Regional, a Regional Registration Fee is implemented by the Board of Directors. Oney Reynolds steps down (retains position on the Fundraising Committee).
2008 : The 9th 9p- Regional is held on beautiful Cape Cod, MA and is hosted by the Young, Murphy and Krauspe families. A total of 35 families make the journey to the East Coast of the US. Dr. Crowe and Dr. Schwartz also attend this event. The 9p- roster now has 240 families. Patty Duffy-Krauspe’s term expires (retains position on Contact Committee and keeper of the roster). Welcome Danielle Kean & Christine Wanek to the Board of Directors. After 10 years, the Network’s web page www.9pminus.org is renovated!
2009 : Terms expire for Sandy Whelan and Sally Boston. The Board of Directors holds a May retreat in St. Louis, MO. Four new Board appointees are welcomed at this retreat: Kris Constantino, Amy Yarcich, Dana Glore and Andrew Earles. The major topics of discussion were Regionals and Fundraising for the Network. It was determined that 2-3 annual fundraising events would help raise funds for the Network and provide a much-needed financial base for Regionals. Thus, the fall “Duck Race” was born! Prizes are awarded to 1st, 2nd, & 3rd place “duck” winners, with the Grand Prize of a Mexican Cruise awarded to the family that raised the most dollars (courtesy of Darlene Nydham – thank you for the generous donation!!). The Duck Race was a huge success for the Network!!
2010 : Terms expire for Carrie Givens (retains keeper of the Network PO Box) and Cherie Anderson (retains overseeing the Network website). Welcome Carrie Shahbahrami as a new Board of Director appointee. The 2nd Fall Duck Race was held and, once again, proved to be another success for the Network. Because of the successful fundraisers, the Board of Directors agreed it would “host” the next Regional, with a name change to a Triennial seeing that family gatherings are being held every three years! It was decided to be held in St. Louis, MO with the Glore family to host on behalf of the Board. Dr. Schwartz has moved from Chicago to North Carolina to take a position with LabCorp. He assured the Board that the 9p- information will go with him to NC and he will proceed with research.
2011 : Term expires for Danielle Kean (retains the position of eGroup moderator). Wendy Bauer joins the Board of Directors, making it 7 strong! The 10th 9p- Family Triennial has moved back to the central US, being held in St. Louis, MO. A total of 41 families registered, with families from Canada, England and India in attendance! Dr. Schwartz presented up-to-date information to the families in attendance. He also agreed to one-on-one meetings with parents that request it. The Dr. Alfi Love Awards presentation at the Triennial is kicked off with a 5-minute presentation from Dr. Alfi. The Network roster is now at over 270 families!
2012 : Terms expire for Christine Wanek (retains the position of co-eGroup moderator, sender of birthday cards, and New Contact Committee member) and Andrew Earles. Jill Hotzmann and Carmelyn Vedar join the Board of Directors, maintaining 7 volunteers strong! The official name of our every-three-year gathering to changed to “Family Reunion.” With the electronic world becoming ever prevalent, the addition of a “Chromosome 9pminus Network” page has been created on Facebook. In addition, a new logo has been created for our Network as well as the roll-out of a new and improved website. Our Network continues to grow with over 360 members in many countries all over the world!