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2019 PWSA (USA) 35th National Convention

Youth & Adult Program (YAP) – 7 yrs and up

 

Filled to capacity each year, children and adults diagnosed with PWS, ages 7+, are involved in an innovative structured program, carefully designed to meet their unique medical, physical, and emotional needs. This program is a wonderful opportunity for friendships to develop, fun to be had, and to be a part of a peer group that truly understands one another. The individuals are divided into eight groups based on age and are supported by highly trained and experienced staff members who understand their unique challenges. For two days, they are motivated, praised and encouraged to try new activities all within a safe and therapeutic environment. 

Click here to view the YAP schedule


Kim Tula – YAP Program Director

Kim holds a Master’s in Human Services with a specialization in Multidisciplinary Human Services.  She also holds a Bachelor’s Degree in Psychology and Sociology, and is a Certified Social Worker.  Kim has 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.  Kim has held numerous positions throughout her career and is currently a Family Support Counselor for PWSA (USA). Kim has been actively involved with the Youth and Adult Program (YAP), at the National PWSA conference, since 2011. In 2015 and 2017, she was tasked with organizing YAP in addition to working as a Behavior Specialist.  Kim loves working with individuals with PWS, helping improve their lives, and watching them grow.  In her free time, she enjoys spending time with her husband and daughter, horseback riding, and gardening.

Crystal Boser – YAP Assistant Program Director

Crystal is from Glendale, WI, and the proud mother of two amazing young men. Kyle 24 years old lives in a residential group home, while Kameron 16 years old resides at home and attends the local high school. Crystal earned her Masters in Business Administration with a concentration in Healthcare Management and her Bachelors Degree in Business Management from the University of Phoenix. Currently, Crystal is the Office Manager at the Midwest’s leading functional medical clinic and is responsible for managing the day-to-day operations of the clinic. Crystal has been involved with PWSA-WI, Inc. for over 15 years and served in numerous roles, including her current role as President, which she has held for over 10 years. In addition to her role with PWSA-WI, Inc., she also serves as a board member for PWSA (USA) and is the PWSA (USA) Chapter Relations Chairperson. She is also heavily involved in the National PWSA Convention hosting the Chapter Leaders Meeting and Co-Chairing the Youth and Adult Program (YAP). When Crystal is not working or volunteering within the PWS community, she can be found mentoring Kameron’s Robotics team or visiting friends and family in Indiana.

2019 PWSA (USA) Platinum Convention Sponsor


2019 PWSA (USA) YAP Sponsor


Questions?

Contact Jackie Mallow

941-487-6726

jmallow@pwsausa.org

Meet the YAP Staff


Mandi Bandt

Mandi began working with people with PWS in 2014.  She has worked with individuals with special needs since she was sixteen years old, with over twenty  years in direct service.  Mandi currently works as the health services coordinator and occasionally as direct care staff at PWHO.  Mandi is dedicated to working with people with PWS and is very excited to have the opportunity to work in YAP for the first time this year.  When she is not working, Mandi enjoys traveling with her family, curling, hiking and baking.

 

 

Matthew Benjamin

This is Matthew’s (Matt) 3rd time as a group leader with the YAP program.  He has spent a little over 9 years in the Human Services field. Matt has worked for numerous years with adults with Prader-Willi Syndrome.  Knowing that the families attending the conference can be at ease with their sibling/child being looked after by knowledgeable and experienced individuals brings Matt joy, joy that he uses to motivate himself to ensure his Krewe has a fun, memorable and safe weekend while in our care.  Matt states “Even though I no longer work in the Human Services field, Individuals with Prader-Willi Syndrome will always have a special place in my heart”.  Matt spends his free time volunteering for a plethora of activities/fund raisers that family and friends ask him to do because they know he can’t say no to a good cause, running events at gaming conventions and helping his lovely wife with raising their 2 children.

“Love is that condition in which happiness of another person is essential to your own” – Robert A. Heinlein

Don Berg

Don is a husband, father of three girls and a business man.  He has extensive volunteer experience ranging from helping construct schools for deaf children in Jamaica and Mexico, survey and beautification efforts on the Ice Age Trail, a thousand-mile hiking path entirely within Wisconsin and serving as the Treasurer and Board member for the LOVE > hate project, a non-profit focused on ending male on female violence.  For Don volunteering is all about helping build safe and encouraging environments for everyone from children to adults.  He is looking forward to being one of the Program activity leaders.

Lissa Berg

Lissa was a homeschooling teacher.  She has extensive experience volunteering with nonprofits such as Paws for Love, Therapy Dogs International, Miss Rodeo Wisconsin organization and LOVE>hate project!  She is the proud mother of three daughters, “a Peace Corps volunteer in the middle east, a business owner/gymnastics teacher and Miss Rodeo Wisconsin 2015!  Lissa has a huge heart for the Prader Willi Association and their families and is happy to volunteer with this amazing organization!

 

Stephanie Brady

Stephanie has over five years’ experience working with both adults and children with PWS.  Stephanie has worked in a variety of settings with people with PWS and enjoys watching them grow and experience new and fun experiences.  Stephanie volunteered at YAP 2015 & 2017; she is excited to be back again this year, as a Krewe teacher.  Stephanie is looking forward to seeing all the previous participants and getting to know those that are new to the YAP experience.

 

Caleb Enockson

Caleb has been working with people with Prader-Willi Syndrome since May 2010.  One of his favorite things about working with these great people is spending time getting to know each of them as individuals. Caleb has formed strong and trusting bonds with many resident’s he works with and feels there is nothing more rewarding than knowing he’s helped make a difference in their lives.  Caleb has an adopted sister that is nonverbal with autism and cerebral palsy. Growing up with her and helping provide cares for her has really sparked his passion for working in this field.  When he is not working or in school, Caleb enjoys traveling with his wife Haley, taking photos, cooking, spending time with family and friends, going to concerts, camping, and playing the guitar.

 

 

Haley Enockson

Haley has worked with young adults with Prader Willi Syndrome since September 2011. Haley enjoys helping to provide a routine and safe environment for the individuals she supports, helping each one to live a happier and healthier life, is very rewarding. Haley has had a passion for taking care of others from an early age. When Haley is not working, she enjoys cooking and watching movies at home, as well as traveling with her husband Caleb, as well going to concerts, camping, fishing, and spending time with family and friends.

 

 

Ryan Finkenbinder

Ryan has worked with individuals with Prader-Willi Syndrome since 2009.  He thoroughly enjoys his time interacting with all of the residents and prides himself on taking the time to get to know and building a solid rapport with as many of the individuals he works with as he possibly can. Ryan stated that he likes to help out as often as possible because when they are happy, he is happy.   Ryan has been a group leader at YAP since 2013. Ryan stated “Some of my favorite memories were just doing simple things like taking someone on an 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”.  We are happy Ryan is joining us in YAP 2019.  He is looking forward to seeing his old friends and meeting new ones.

Alysa Fuentes

Alysa is a mother of 3; Kylie, Mateo and Mariela.  She started her journey with PWS in 2009, working for Prader Willi Homes of Oconomowoc. Alysa is dedicated to working and helping people with PWS.  In her spare time, she enjoys spending time with her family and making a difference in others’ lives.  This is Alysa’s first year working in YAP and she is very excited to meet all the participants.

 

Alex Fuentes

Alejandro (Alex) began working with young adults with Prader-Willi Syndrome in 2012 and it has been one of the most rewarding experiences of his life.  Through working with people with PWS Alex has seen the struggles they face throughout their lives and learned how compassionate you have to become to be able to work with such amazing individuals.  They taught Alex how to be patient, how to deal with the day to day problems without throwing life out the window.  While Alex currently is not working directly with people with PWS, he hopes to return to working in the PWS community again.  Working with people with PWS has marked Alex’s life in a positive way.

Robert Hoene

Robert has been working with individuals with Prader Willi Syndrome for over two years.  For the majority of this time he has spent time working as a 1:1 residential counselor with an individual diagnosed with Prader Willi Syndrome.  Robert has especially enjoyed watching the individual’s growth over the years and watching him develop as a young adult.  This will be Robert’s first year involved with the YAP program.  He is eager to meet all the participants and share this wonderful opportunity with them.  In his free time Robert enjoys hiking, the outdoors, road trips and traveling.

 

Lydia Jones

As a former Miss Rodeo Wisconsin, Lydia Jones loves working with all sorts of people and is very passionate about working within communities. Besides loving her career as a hair stylist and nail technician, she loves volunteering at nursing homes with her therapy animals. She especially enjoys teaching children and adults how to ride horses and how to be around animals. This will be Lydia’s first-time volunteering at YAP and she is absolutely thrilled. She is most is looking forward to working with her specific group and assisting in making this one of the best weeks ever for them!

Chase Jones

Chase Jones is a husband, rancher, and Agricultural Loan Officer from Wisconsin. He loves being outside and taking care of his cows and riding horses with his wife. He enjoys volunteering at nursing homes with therapy animals, working with Alzheimer’s and Dementia patients as well as volunteering with Meals on Wheels, and has previously enjoyed helping teach Children with Special needs in a classroom setting. Chase has not yet been a part of YAP but is looking forward to the exciting adventure, fun, and new friends that await him this year.

 

Angie Lazu

Angie is single mom, raising her 14yr old daughter Rosalie.  Angie’s main focus is raising her daughter and continuing her education. Angie has over 20 years of experience working with people with special needs, including young adults with Prader-Willi Syndrome.  When asked why she enjoys working with people with PWS, Angie stated “I absolutely enjoy hearing of all the success stories, and great accomplishments these unique Individuals can make.  I am so looking forward to assisting PWSA (USA) at this year’s YAP program”.

Kristina Lumby

Kristina holds a Bachelor’s Degree in Sociology and has been working with individuals with Prader Willi Syndrome in a residential care setting for over ten years. Kristina has also been involved with the Youth and Adult Program (YAP), at the National PWSA conference since 2015. She truly enjoyes watching so many of the same participants come back each year and to see their growth and smiling faces.  In her free time, I enjoy spending time with my niece and nephew and hiking.

Jamie Milaeger

Jamie found her passion working with individuals with Prader-Willi Syndrome in 2006 and has volunteered in YAP since 2011.  Jamie has also been a coach for Special Olympics, participated in many Hobby Days, On The Move Walks and other events planned to support PWSA and the fight to provide awareness, education, support and research.  Jamie loves helping to enrich the lives of those she works with.  Jamie says she finds it an honor and privilege to travel to several conferences to participate in as well as support the Young Adult Program which has 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.

Tony Nelson

Tony has been working with individuals with Prader Willi Syndrome in a residential setting for over four years.  This is his first year being involved with the YAP program and he is excited to take part in this exciting opportunity.  In his free time, he enjoys spending time with his daughter and family, golfing and camping.

Sarah Nissen

Sarah has been working with individuals with Prader-Willi syndrome for the past sixteen years and this will be her third time supporting YAP at the National Conference.  The Prader-Willi community is truly unique, everyone is so supportive and no matter the length of time between seeing one another it always feels like you are coming home. From the families, participants and volunteers, everyone is happy to see one another and for those 2 days everyone can truly enjoy themselves and feel as though they are accepted. I think the most favorite part of conference is truly just seeing the joy on the participants faces when they come to YAP and all the fun and memories we make, during our time together.  When I am not working with the Prader Willi community, I enjoy spending time with my family as well as tending to my chickens and gardens.  I look forward to seeing everyone in October!!

Sally Pfeiffer

Sally has been supporting, caring for, working with and advocating for developmentally disabled children and adults since my younger sister was born.  Her sister is now fifty-six years young! Sally has had the pleasure of teaching the dance class for the YAP program at the PWSA National Convention since 2011.  I am grateful to PWSA (USA) for giving me the opportunity to dance with all my favorite people once again this year.“So, Yappers, get ready because ready or not, here we come.  We are going to make this your best convention ever!  I can’t wait to see each and every one of you 😊”

Liz Seer

Liz recently received her Bachler’s degree in Psychology from Ottawa University, as well as her associate degree in Human Services.  Liz has worked with adults with Down syndrome and adults with Prader-Willi syndrome.  Liz truly enjoys working with people with PWS and has learned so much from them.  With the knowledge Liz has gained from the PWS community, she knows she will be a great asset to the 2019 YAP team.  She is so excited to be given this opportunity and can’t wait to be a part of the YAP experience.

Sam Stanek

Sam has worked with adults with Prader-Willi Syndrome for over five years.  Sam says “in my time working with people with PWS I have learned so much about myself, what it means to be ethical, respectful, and about giving back.  Sam’s positive attitude and high level of energy will be a great asset to YAP 2019. Sam is looking forward to meeting all the participants and working closely with those in his Krewe.  Sam strives to give back  when he can and always look forward to overcoming another challenge.

YAP Volunteers

PWSA-WI Junior Advisory Board Members


Kameron Boser

My name is Kameron Boser and I have an older brother, Kyle, who has Prader-Willi Syndrome. I attended my first PWSA-WI, Inc. event when I was three months old and my parents brought me to Hobby Day. As I got older, I realized I wanted to take on a more active role so I started volunteering at various events and began fundraising for the walk-a-thon, raising over $1000 for several years in a row. When I am not volunteering for PWSA-WI, Inc. I am involved in the Nicolet High School FEAR (Future Engineers of American Robotics) team. I also enjoy hunting with my dad and spending time with my friends. It is an honor to be one of the original members of the PWSA of WI Junior Advisory Board.

Makenzie Gaulke

My name is Makenzie Gaulke. I was appointed to the Junior Advisory Board because I want to help support PWSA-WI, and also because my brother Greysen Gaulke has PWS. In my free time I enjoy playing sports. I play basketball, volleyball, and lacrosse. I also like studying biology, physics, chemistry, math, languages, etc.  This is my second time volunteering of YAP.  I’m so happy that I can support PWSA-WI and be on the PWSA of WI Junior Advisory Board.

Eva Glass

Hi, I am Eva Glass, niece to Jamie Milaeger, and lucky sister of Josaphine Glass, both with who I get to share the wonderful world of Prader-Willi. My aunt introduced my sister and I to this amazing group who became my second family. Having a special needs sister of my own drives me to want to help make a difference with these amazing people. I feel blessed to have been asked to join the PWSA of WI Junior Advisory Board where I can put words into action. I am a freshman at Lake Country Lutheran High School where I enjoy my time not only in my classes but on the volleyball court or ski hill with my teams. I look forward to continuing to make changes in the world as I follow my dreams to become a NICU Nurse.

Josaphine Glass

Hi, my name is Josaphine Glass. My aunt Jamie Milaeger is on the PWSA-WI Board. I was introduced to PWSA-WI by volunteering to help my aunt with the Wisconsin Snowflake Ball. I enjoyed it so much I continued to volunteer, and I am now part of the PWSA of WI Junior Advisory Board. In my free time I like to go rock climbing at Adventure Rock and take pictures. I went to Florida for the National Conference to volunteer with the YAP program in 2017 and am excited to be coming back in 2019. Since being on the Jr Advisory Board I have realized how to love and respect everyone no matter who they are or where they come from. This is important to me as I have a sister with special needs.  The best part of being on the board are just being with people with PWS and having fun. Most of all meeting new people making a difference in their lives no matter how big or small makes me truly happy. I want to keep being a part of this amazing board for as long as I can.

Maddie Tula

Hi, my name is Maddie Tula. My mom, Kim, works for PWSA USA, is on the PWSA-WI Board, and coordinates the YAP program for the National Convention. My mom started introducing me to Prader-Willi Syndrome when I was only 1 year old, by taking me to PWSA-WI events. I started helping at PWS events at a very young age and my involvement and passion continue to grow each year. I have been helping with the YAP program at the National Convention since I was 8 years old. In my free time I enjoy riding my horse, snowboarding, and hanging out with my friends. It is a great eye opener to life when you are with these amazing individuals. I am so thankful my mom has brought me into this community. I’m lucky to be one of the first of four kids appointed onto the PWSA of WI Junior Advisory Board.

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