PWHO

2007 CALENDAR OF EVENTS

PWHO

2008 CALENDAR OF EVENTS

30th Annual PWSA (USA)
by Melanie Ignatowski

National Conference
to be held in
Milwaukee, WI

The highly anticipated 30th annual National Conference on Prader-Willi Syndrome will take place in Milwaukee at the Four Points Sheraton Hotel located by the airport on July 2-4th, 2008.  PWSA of WI, Inc is working with PWSA (USA) in hosting this event.  It is the first time this sort of event has ever taken place in our state. 

The conference, titled “Moo-ving Forward” will focus on the hope and progress being made in creating a better world for children and adults with Prader-Willi Syndrome.  This is a unique opportunity for professionals, parents and all who are impacted by this disorder to listen and learn from experts. 

Education and support makes a difference in the health and happiness of children and adults – especially for those who are impacted by this rare disability called Prader-Willi Syndrome (PWS).  Knowledge and understanding empowers people to:

• Be proactive in preventing health complications and promote wellness
• Create successful life experiences in a person’s home, school, work and community
• Strive to make children and adults who have PWS as independent as possible. 

• A 1 day Scientific Day meeting for researchers and other professionals to share new advances in research and knowledge in the field of PWS.
• A 1 ½ day conference for residential providers who support adults with PWS
• A 2 day conference for parents, caregivers and others to assist them in gaining the support, education and tools needed to raise a child with PWS.
• A 1 day meeting for chapters or groups who raise awareness and advocacy for persons with PWS to gather and exchange information.
• An activity program for children and adults also takes place within the conference schedule so that children and adults with the syndrome can meet others who face some of the same challenges.  Management of their unique nutritional and behavioral needs will also be provided during this activity program.

"YEE-HA!"

by Susan Morris, Assistant Director of Clinical Services

What a blast we had on September 18, 2007 when Prader-Willi Homes of Oconomowoc, in a collaborative effort with our sister company, Oconomowoc Developmental Training Center, hosted it’s first ever Square Dance. 

The idea came to me by way of a parent.  Here at PWHO, our parents play an integral role on our treatment teams.  Bonnie Kraft, parent of an individual served in our program (who kindly gave permission to use her name in this article-Thanks Bonnie!), recalled she started thinking about a dance as a form of exercise after filling out a satisfaction evaluation related to her daughter’s services. 

In a phone call to the family to update them on progress in placement, Mrs. Kraft shared that idea.  She knows how much our population loves to dance and what an important piece exercise is in our individual’s daily programming.  She specifically mentioned that a square dance might be a really great option to look into.  I let her know what a wonderful idea that was and that I’d see what I could do. 

After the phone call, I mulled over if this idea could actually get off the ground.  “Think, think, think Morris” played again and again in my head, in the typical Winnie-the-Pooh fashion, which became imbedded after hours of video play in my own home years ago.  Then the “ah-ha” moment struck.  I recalled from my days at ODTC, that the Adaptive Physical Education instructors Mary Murphy and Angel Hansinger, used to hold a Square Dance Club years ago.  I approached them and rattled off the idea.  Reluctant at first, speculating on how a dance with so many with one diagnosis in the same room would work out, they agreed.  They began to look forward to seeing so many of our individuals that they haven’t seen since they moved into the “adult world.”  Mary became so interested in the project, she wrote a paper for her summer course on the benefits of square dancing for those with PWS. 

With capable “callers” for our dance and music to boot, we set sights on securing our location and sending out sign-up sheets to our group homes.  We included students from ODTC with PWS in our invitations as well.  With clearance from supervisors to proceed, we set up a few planning meetings, locked in a date, and received names of individuals interested in participating. 

The day finally arrived, and we dosie-doe’d and promenaded our hearts out.  Then we swung our partner round’n’round to the sweet grooves of Glen Cambell’s “Gentle on My Mind.”  Our callers walked us through the steps and in the end we were able to do the steps to the music.  Some circles went to the beat of their own drum or did the dance freestyle, but in the end it really took the pressure off of trying to do it perfectly and was much more fun for all. 

After a sugar-free lemonade break, we wrapped up the day with the Chicken Dance (we are in Wisconsin…).  We had over 30 participants from PWHO and 3 students from ODTC that were able to attend.  Teachers and therapists from ODTC, and direct care staff from PWHO and ODTC stopped in to enjoy the activity and support the dancers.  Our grand total in the end was probably around 60+ that attended. 

Since the dance, there continues to be very positive feedback from both the adults and the children that participated.  Personally, I haven’t seen that many smiling faces under one roof in a long time.  That alone made it all worthwhile.

It was a very fun and heart warming activity to have been involved in.  Was it worth it? Yes!  Will we do it again?  We hope so.  Mary, Angel, and I have already started talking about maybe setting up another Square Dance after the holiday season has passed and cabin fever sets in.  We may even get as creative as to try to hold a Sock Hop or a Disco instead.  The possibilities are endless when you have such a dedicated group of people to work with, and such wonderful and inspiring individuals and families to support and serve.  

2007 PWSA-USA National Conference

In August of 2007, five PWHO employees traveled to Dallas, TX for the 29th annual PWSA-USA National Conference. They spent three fun-filled days enjoying the many different speakers, sessions, and activities offered to professionals, providers, families, and individuals diagnosed with Prader-Willi Syndrome.  Lizabeth Moser-Sadzewicz, M.S.W., A.P.S.W and Jackie Mallow were asked to speak at the conference and were given the opportunity to share their knowledge and long term experience. Lizabeth and Jackie have been attending and speaking at both the PWSA National and International conference for over ten years.

In addition, PWHO had two employees who were given the opportunity to attend the conference for the first time.  One of these employees, Melanie Ignatowski, stated “This was the first National conference that I have ever been to, and it was an unforgettable and an extremely educational experience.  It was encouraging to see the number of people who came to support one another and become more educated on the different aspects of Prader-Willi Syndrome. I was given the most amazing opportunity to speak to so many different providers and families who shared their stories of struggle, faith, and success with me and my co-workers.  I highly recommend the conference to anyone impacted by the syndrome.”

For more information regarding the PWSA-USA conference, go to the Prader-Willi Syndrome Association-USA website at www.pwsausa.org. 

PWSA – International Conference Romania
“Not just a conference but a life changing journey”

by Jackie Mallow, Director of Admissions and Consultative Services

Several months back I had the honor of a formal request from the IPWSO President Pam Eisen to assist two doctors from the Germany with developing and supporting the Provider’s Day portion of the IPWSO International Conference which was to be held in Cluj, Romania.  I was also asked to develop a presentation which would not only support what we have been successfully doing within Prader-Willi Homes of Oconomowoc, but throughout the United States in regards to supportive living options. Even with the obvious language and time barriers, we had numerous phone calls and e-mails where we developed the conference plans for the provider section and contacted presenters from all over the world in order to provide the attendees with a solid understanding of what other countries and cultures are successfully doing to support individuals diagnosed with Prader-Willi Syndrome. Bags packed and my presentation safe in my carry on luggage, Marguerite and I were off to Romania to share and receive information with professionals, providers and families from all over the world. I knew little to nothing about Romania and the one travel guide we could find on Romania would soon become our best friend and well used throughout our stay.

Landing in Cluj, Romania and feet safely on the ground, we both looked around and knew that this would be like no other traveling experience we have had. Romania was so beautifully rich in culture; churches and monasteries were built back in the 1600s and still remained in use. Women in their babushkas could be seen standing outside their homes talking over fences or sitting on small benches. In the countryside farmers are still using sickles and horses to tend to their fields Homes with outside wells for their source of water, and limited to no lighting lined the villages. The mountains were beautiful and more often then not, you could see the gypsies or town folks traveling to the bigger cities by horse and cart. In the city, although more advanced, one could still see and feel the horrific impact that the Communist rule had on the people of Romania. It was like being in one of our history books which spoke of Romania; however, the infrastructure had not changed much.  Everywhere you went you felt pulled into the culture, driven to know more about the history of the country and the people who lived there. We met so many people during our stay and each played a part in bringing us one step closer to a glimpse of how life was and is.

Prader-Willi Syndrome brought us together, in this culture filled land, and here we shared our common thread; a passion and drive to want to learn more in order to provide the best quality of life we can for individuals diagnosed with PWS. There were 74 countries represented; speakers and experts from all over the world, each bringing a piece of knowledge, each wanting more then what they gave. Our host country opened their doors to allow this opportunity to happen, and they gave so much more then they will ever know.

2007 Disability Policy Seminar

by Marguerite Rupnow, Director

On March 4-6, 2007 Jackie Mallow and I had the opportunity to go to our Nation’s Capital to attend the Annual Disability Policy Seminar.  The focus of this conference was to educate people on the current legislation that is being proposed in both the Senate and Congress.  We spent 3 full intensive days listening, learning, and sharing how to become an informed Advocate for people with disabilities.  

Our final day in Washington, DC I was able to get an appointment with the Representative for our district.   We met with Representative Thomas Petri and his Human Services’ Aide to briefly discuss, briefly educate, and to request that he support a few of the bills that were up for vote.  There are so many bills regarding budgets, Autism, Social Security, DD Bill of Rights, State Insurance Program, Medicaid, IDEA, No Child Left Behind, Direct Service Workers, Community Living Assistance, ADA, and Voting Rights. I chose three that were close to my heart that directly impact us who either support an individual with a disability or have a child with a disability. 

As I reflect on the conference and what I gained as an advocate, is that we all need to take a more assertive role in forming relationships with our Representatives and Senators.  By that I mean that we vote for these elected officials and as a constituent it is our responsibility to watch if they are supporting the legislation that matters to us.  The more we are involved the more we will be heard.  It does not take much time to take a piece of legislation and monitor its progress but inactivity gains nothing. 

No longer will I remain a semi informed voter.  I have begun to advocate more intensely by emails, phone calls, letters, in person meetings and have been watching the voting history of who is in office currently.  We all need to break down the Partisan walls and get whoever in office to see the desperate need that is out there for some of the nation’s most vulnerable people.   They need my voice and they need yours.

Previous Articles
Hobby Day
Special Olympic Basketball