President: Crystal Boser – Glendale, WI
I am the mother of a 21-year-old young man who has Prader-Willi Syndrome and I have been involved with the world of PWS ever since his diagnosis at age 4. Soon after my son was diagnosed I became involved with the Indiana state chapter by organizing a walk-a-thon to help raise money and spread awareness about PWS. The following year I moved to Wisconsin and became involved with the local state chapter here. I started by volunteering as a hobby leader at Hobby day and have continued volunteering for our spring event for eleven years and counting. I have also worked in conjunction with another board member for the past twelve years on organizing and hosting the annual golf outing. This past year, I helped organize the chapters first Strike Out PWS bowling event. I am currently in my 7th year as President of the organization and in the past have served 4 years as Vice President and 1 year as a Board Member. In addition to these roles, I was the Volunteer Chair for the 2008 National PWSA Conference, I assisted with the 2011, 2013 and 2015 National PWSA Conference. I am the Chairperson of the PWSA (USA) Chapter Leaders team, which helps support and mentors other state chapters. When I am not working on various projects for the organization I am spending time with my family in the northern woods, visiting close friends in Indiana and watching my youngest son compete in Robotics. In 2013, I graduated with a Masters in Business Administration with a concentration in Healthcare Management and was promoted to the Director of Operations at the pediatric office I have been employed at for the past 10 years. I am thankful for the time I have spent on the PWSA-WI, Inc. board and I’m looking forward to continuing to help PWSA-WI, Inc. make an impact on the lives of individuals with PWS and their families.
Vice-President: Jackie Mallow – Watertown, WI
Jackie Mallow has worked directly with children and adults, who have been dually diagnosed since 1985. She has extensive training, experience, and education in the areas of behavior/crisis management, program/staff development, and residential supports. She has worked exclusively with individuals with Prader-Willi syndrome since 1996, providing educational training, behavioral support, guidance and consultation nationwide. With over thirty years of field experience, she now enjoys her roles through Root Connections Consultative Services, LLC, as the Executive Program Consultant, and as the Conference Coordinator for Prader-Willi Syndrome Association (USA). Jackie is the current Vice President of PWSA-WI and has served on the board since 1997. From 2006 to 2015, she served on the Board of Directors for PWSA (USA). She also takes an active role in supporting providers through the PWSA (USA) Professional Providers Advisory Board, and on the IPWSO International Professional Providers & Caregivers Board. Since 1997 she has been presenting both Nationally and Internationally on “Supporting the Unique Challenges of Individuals Diagnosed with Prader-Willi Syndrome.”
Secretary: Amber Gaulke – Waukesha, WI
I am a mom of three children ages 12, 4, and 2. My son who is my youngest was diagnosed with Prader-Willi Syndrome at three weeks old. Once I reached out to PWSA of WI and attended my first walk for PWS when my son was just four months old I knew I wanted to be involved and help wherever I was needed. Since my son was born I have met and have been helped and supported by so many people and I hope to do the same in the PWS community.
Treasurer-Thomas Hughes-Cassville, WI
My name is Bobbi Pogrant and I live in De Pere where I have worked in the printing industry for almost 12 years. My husband, John and I are the proud parents of our daughter, Addison. I enjoy art, photography, and spending time with my family.
As a parent of a young child with PWS, I hope to bring a perspective that can relate to others with young children as a Board Member. Although raising a child with PWS has its challenges, I believe it has made me a better parent in more ways than I ever imagined. I enjoy problem solving and thinking outside-the-box when other solutions are not working. It would be an honor to be a part of and contribute to PWSA-WI.
Board Member: Nancy Burlingame – Waterford, WI
I am grandmother to Kyle, a 17 year old with PWS. I have been very involved with Kyle's care throughout the years. When Kyle experienced difficulties due to a new baby in the home, Kyle came to live with me for several years until his transition into residential care in July of 2008. Since the transition I have continued to be involved, bringing him home for home visits and taking him on vacations.
I served as co-president of PWSA of WI, Inc. from 2003-2005 and look forward to joining the board once again. Throughout my time off the board, I have continued to participate in the annual golf benefit and the On The Move events. Prior to moving to Wisconsin several years ago, I was very involved with the state chapter in Indiana, serving as vice-president of the northern part of the state.
Board Member: Melanie Laur – Oconomowoc, WI
Melanie is the Admissions Coordinator at Prader-Willi Homes of Oconomowoc (PWHO). She has been working with individuals diagnosed with PWS since 2002 and helping out as a volunteer for PWSA-WI since 2005. Melanie has helped plan the annual golf outings, is on the Walk-a-Thon and Winter Social committee, and handles all of the PWSA-WI financials as their Volunteer Accountant. Melanie is passionate about helping others and takes great honor in having the opportunity to support families from around the country with the day to day challenges they face with PWS. She is also a trainer at PWHO and enjoys teaching and motivating others. In her spare time, she enjoys spending time with family and friends. She is a volunteer for Habitat for Humanity of Waukesha County, and a proud member of her church.
Board Member: Jamie Milaeger – Oconomowoc, WI
My name is Jamie Milaeger. I have my degree in Psychology and Social Work through the University of Wisconsin Whitewater. While in school my mentor/professor suggested that after my graduation I seek employment through a company in Oconomowoc that specialized in working with adults with Prader-Willi Syndrome. I was looking to work with individuals with disabilities as I had worked with children diagnosed with Autism throughout my schooling. So in 2006 I took his advice and applied with Prader-Willi Homes of Oconomowoc. Although, I knew about PWS through my education I learned quickly that I had not learned enough. I started as a residential counselor and in less than a year was promoted to manager. I worked at PWHO for 8.5 years and during that time I found a passion to enrich the lives of those I worked with. I think that was because they enriched my life more than I thought could happen. Though in September 2014, I left PWHO; my time there was and always will be some of the most blessed moments in my life. I couldn't leave it all behind though and am currently the PWHO Special Olympic Coach for Aquatics which is an amazing opportunity that I truly enjoy. During my time with PWHO I was very well educated in the support and treatment for adults with PWS. I learned through running one of the group homes about the everyday struggles of people living with PWS; and the supports needed to get through those everyday struggles. I also had the firsthand experience in seeing the amazing changes and outreach an organization like PWSA provides to individuals with PWS. I participated in many Hobby Days, Walks and other events planned to support PWSA and the fight to provide awareness, education, support and research. I have also had the honor and privilege to travel to several conferences to participate in as well as support the Young Adult Programs which allowed families the opportunity to attend knowing that their child, sister, brother, or grandchild was in a safe, fun, and encouraging environment with people who understood and had experience working with individuals living with PWS. I found that passion over 8.5 years ago to support individuals with PWS as well as their families and now as a Board Member I am happy to be able to do so in another way.
Board Member: Kim Tula – Lisbon, WI
I hold a Bachelor’s Degree in Psychology and Sociology, and I am a Certified Social Worker. I have worked in a residential care setting since 1990, working with a wide variety of client populations, including children and adults diagnosed with Prader-Willi Syndrome, and with intensive treatment needs. I have held positions as a Direct Care Staff, Behavior Specialist, Clinical Specialist, and I am currently a Clinical Coordinator for Prader-Willi Homes of Oconomowoc (PWHO). I have also been involved in the Youth and Adult Program (YAP), at the National PWSA conference, as a Behavior Specialist since 2011. In 2015, I was tasked with organizing YAP in addition to working as a Behavior Specialist. I am currently planning and organizing YAP for the 2017 National Convention. I love working with individuals with PWS, helping improve their lives, and watching them grow.
In my free time, I enjoy spending time with my husband and daughter, horseback riding, and gardening.
Board Member: Lynn Ann Parrish-Verona, WI
Ms. Parrish lives in Verona, WI and is the mother of a 25 year old daughter. As the Corporate Secretary for First Business Financial Services, Inc. (FBIZ) she is responsible for overseeing the Company’s corporate governance framework, ensuring compliance with stock exchange listing standards and SEC reporting and compliance, implementing decisions made by the board of directors and overseeing shareholder relations. Prior to joining FBIZ, Ms. Parrish worked at CUNA Mutual Group in the Governance, Risk and Assurance department; as a branch manager at both State Bank of Cross Plains and Park Bank; Executive Director of the Cross Plains Business Association and, as a Research Coordinator for the Dean Foundation for Health Research and Education. Ms. Parrish is active in the community as a volunteer for Susan G. Komen Wisconsin and United Way of Dane County Women’s Leadership. Ms. Parrish is a member of the Society for Corporate Governance and the National Association of Corporate Directors. Ms. Parrish is interested in serving on the Board of PWSA of WI because of Sarah Hughes. Ms. Parrish met Sarah through her sister, Carolyn Jahnke, and looks forward to the opportunity to use her unique experiences in corporate governance, fundraising, and community involvement to give back to the Association that has done so much for Sarah Hughes and her family.
Board Member: Andrew Gaulke – Waukesha, WI
I live in Waukesha with my wife Amber and three kids Makenzie (12), Myka (4), and Greysen who has PWS (2). I have worked as a tool designer in the automotive industry for the last 20 years. I enjoy camping with my family and attending the many sporting events my kids are involved in. As a parent of a child with a relatively new diagnosis I hope to bring a new perspective to the board not only to other families with newly diagnosed children but to the entire PWSA of WI community. It would be a privilege to help raise awareness and provide support through this great organization.
Board Member: Carolyn Jahnke – Verona, WI
Ms. Jahnke is from Verona, WI, mother of four beautiful children (3 boys and a girl) and the proud sister of Sarah Hughes, a resident at the Prader-Willi Homes of Oconomowoc. She earned her Juris Doctorate from the University of WI and her Bachelors Degree in Business Administration and Management and Political Science from Edgewood College. Currently, she is the Manager of Board Governance at CUNA Mutual Group responsible for managing the corporate governance activities of over 30 companies, including its nonprofit foundation. Prior to joining CUNA Mutual Group, Ms. Jahnke worked with Northern Suburban Special Recreation Association (NSSRA) Board of Directors. NSSRA provides and facilitates year-round recreation programs and services for children, teens and adults with disabilities who live in the partner communities (ten park districts, two cities and one village in the northern suburbs of Chicago). Prior to working at NSSRA, Ms. Jahnke worked in the Wisconsin Legislature for various legislators with a focus on public health and health care legislation. During her time in the Legislature, she managed a number of campaigns and raised hundreds of thousands of dollars to fund those campaigns. Ms. Jahnke looks forward to the opportunity to use her unique experiences in law, fundraising, governance and recreation to give back to the Association that has done so much for her sister and family.
I worked at Prader-Willi Homes of Oconomowoc from 2009 to 2017. In that time, I’ve done everything from being a 3rd shift staff, a 1:1 direct support staff , a 1st shift medical staff and a Program Manager for one of the group homes, beginning in 2012. I thoroughly enjoyed my time interacting with all of the clients company wide and prided myself on taking the time to get to know and building a solid rapport with as many of the individuals that resided in the company as I possibly could. I tried to help out as often as possible because when they were happy, I was happy. Some of my favorite memories were just doing simple things like taking someone on a personal outing or playing a game because it was during those moments I really felt I could give that person my undivided attention and really listen to them. Those bonding moments were something I will always cherish.
Program Director: Joshua Escher – Appleton, WI
Joshua comes to the organization with a background in teaching. He spent three years as a 4th grade teacher and one as a middle school social studies teacher. The educational experience that had the biggest impact on him though was working as a paraprofessional in a cognitive disabilities classroom. It was there that he discovered a love and calling for working with individuals with disabilities. Joshua hopes to bring a fresh set of eyes and ideas to the organization to keep pushing PWSA of WI toward its goals. In his spare time Josh also works at a youth center, is a coach, participates in numerous athletic activities, plays bass, and enjoys the outdoors.