Meet a DSAW Leader: Krystina

Hi! My name is Krystina Jankus. I have been with DSAW now for over a year and recently became the President of the Sheboygan & Surrounding Counties Chapter. My youngest baby girl is 2 and was diagnosed with Down syndrome -- she is the reason i have become so involved with DSAW. 

In my time with DSAW thus far, I have helped to plan and host events throughout our coverage area, and was the Raffle Captain for the 2017 Sheboygan Down Syndrome Awareness Walk. Since Phoenyx was born, I have wanted nothing more than to learn more, find every opportunity for her, and show others that she is not different! DSAW has helped me become stronger and more aware of thingsI may not have been aware of before.

Until Phoenyx was born, I was a hairstylist of 11 years. I married my husband in 2016 and have 3 amazing kids! If you live in the Greater Sheboygan Area, I hope to see you at one of our upcoming events.

Meet a DSAW Leader: Mary West

Hi! My name is Mary West. I joined DSAW Family Services in 2015 and currently serve as a daily life skills specialist, IEP/Behavior specialist, and a job developer/coach.  There are few things that I enjoy more than helping my clients succeed and watching their joy when they do.  This truly is my dream job!

My background is as an elementary special education teacher.  I hold a bachelor’s degree in Educational Studies and Youth Leadership and a masters degree in Exceptional Education, both from UW-Milwaukee.  I come to DSAW Family Services after just over a decade of working in elementary schools, first as a paraprofessional in the Whitefish Bay School District, and then as a teacher in the West Bend School District.

I’ve been married to my amazing husband since August of 2014.  We are hoping to start a family soon.  We enjoy spending time with our family and friends, as well as travelling.  In the past few years I’ve been to such far off places as Thailand and Cambodia.  However, I’m just as happy traveling within the U.S. to spend as much time as possible with my awesome nieces and nephews, or following the Wisconsin Badgers basketball team, of which I am a huge fan.  Go Badgers!

Taking on my position with DSAW Family Services is one of the greatest decisions that I’ve ever made.  I love spending time with my clients and enjoy that every day is a new adventure.  In particular, I love helping clients find jobs.  Sharing in the joy of watching a young person with a disability succeed in his or her first job is something that never ceases to bring me happiness.

I cannot imagine working with better colleagues and clients on an everyday basis.  I look forward to meeting more of you as my journey with DSAW Family Services continues!

The Novaceks

When you make a gift to the Down Syndrome Association of Wisconsin, you fund life-changing programs and services that support thousands of people around the state. For Stephanie and Tom, the Parent's First Call program has been invaluable on their journey. 

When Stephanie was pregnant with Tommy, a prenatal test indicated a high probability that their son would have Down syndrome.

"We were surprised at the number of times termination was brought up, simply based on the high likelihood of having a baby with Down syndrome." They received few messages of congratulations or excitement. At first, they were terrified about what the diagnosis meant for Tommy and for them. 

However, their attitude quickly changed after becoming connected with DSAW. Through the Parent's First Call program, Stephanie and Tom received resources, fraternal support, and hope. 

"Our outlook on this new reality, which seemed overwhelming at times, improved greatly after the first Parent's Night Out that we attended. Meeting others with similar stories to ours made life feel normal again. It was refreshing to be able to openly discuss Down syndrome for the first time with people who knew what we were going through." 

Now, more than ever, support for new and expectant parents is vital.Did you know that individuals with Down syndrome are at significant risk to be the first group of people eliminated from the population? 

DSAW is fighting to change this narrative through the Parent's First Call program. This program provides resources, support, and connections to new and expectant parents who have received a Down syndrome diagnosis. DSAW offers Expectant Parent Packs and New Parent Welcome Baskets, and parents have the option to be connected with a trained Support Parent.  

DSAW's Parent's First Call program creates lives of hope, exceeded expectations, immeasurable joy, and unconditional love by wrapping networks of support and resources around parents to address the unique, yet surmountable, challenges facing the Down syndrome community. Since the program's inception in April 2016, DSAW has provided resources and support to more than 70 new and expectant parents across the state and trained more than 50 Support Parents -- and this is just the beginning. The Parent's First Call program is changing lives. 

The Parent's First Call program was so important to Stephanie and Tom that they have now become Support Parents themselves. "The chance to help someone in our same situation is incredible. The Parent's First Call program is the first step to realizing that life with a child with Down syndrome will not be as scary as it may seem, and that everything will be okay." 

Not everyone can be a Support Parent like Stephanie and Tom, but we are counting on the overwhelming support of our community to make the Parent's First Call program a success. When you make a donation to DSAW, you support the Parent's First Call program, along with DSAW's other life-changing programs and services. Together, we can help individuals with Down syndrome exceed expectations and live amazing lives. Will you make a year-end gift to support our vital work? We couldn't do it without you! 

Warmly, 
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin 

Meet a DSAW Leader: Chris Gagne

Hi, my name is Chris Gagne and I am the new Senior Program Director for DSAW-Family Services.  Before I came to DSAW,  I was a Special Education Teacher for the Shorewood School District and the Slinger School District for 10 years.  My favorite part of my teaching career was traveling with my students to Hawaii and the Florida Everglades and watching them grow through all of the adventures we had together.  

This hints at my previous profession as a Recreation Therapist and my love for the outdoors.  My role as a recreation therapist enabled me to work with adults with acquired brain injuries and the elderly.  I was even a camp director out in California and Nevada for awhile.

Having children settled me into the teaching role, getting my Masters degree in education, and finally finding my way into the DSAW world.  I have two biological children (18 and 21) and one foster son age 13.  My husband is a saint in the making and my kids are all adventurous like myself - one heading to South Africa for a couple of years!

I consider my clients at DSAW -FS an extension of my family - my phone is filled with more pictures of them than my own.  I hope I get a chance to meet more of you in the near future.  DSAW-FS is the best !  We have THE BEST staff and really can not be compared to any other agency out there .... because we love those with DS and other disbilities and want to be a part of shaping their future.

Andrew's Story

Today is Giving Tuesday, a day dedicated to giving back to the community. We'd like to share Andrew's story, in his own words, with you today to show you the ways that people with Down syndrome exceed expectations.

My name is Andrew. I have an amazing life. In 1988 when I was in kindergarten, I was in a classroom with kids who had no disabilities. That was really important. It is called inclusion. That is how my education continued, almost always alongside students without disabilities.

In 2002, I decided on a career in child care. There were plenty of people who said I would never get hired, but I did not pay a whole lot of attention to them. I had high employment expectations and worked to make my dreams come true. I have worked at the YMCA in the child care center for the past ten years. I work with four- and five-year-old children in my community. I love my job! 

About six years ago, I moved out of my parents' home and into my own apartment. That was one of the most exciting days of my life! I always wanted to live on my own. I also took an online driver's education course and got my temporary license.

I have been recognized as a good spokesperson or advocate for others who have disabilities. I have been invited to speak at conferences, fundraisers, and schools. With lots of help from my support team at DSAW-Family Services, I have started Andrew's Voice, a motivational speaking business. Check out my website!

Starting a business is not easy, but I am eager to help others who have disabilities. Sometimes I help others by giving them job coaching. Sometimes I help with life skills training. I work at DSAW now with two other self-advocate interns.

I have many people to thank for making my amazing life possible. Thank you for giving me the opportunity to tell you my amazing story.

By supporting DSAW today, you help our loved ones with Down syndrome to exceed the expectations society sets. You provide transitioning services, job training, fraternal support, driver's education, and so much more.

Andrew has an amazing life. You can give others the same opportunities by donating to DSAW today.

Warmly,
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin

PS - Consider donating your savings from Black Friday and Cyber Monday to DSAW! It's an easy way to support your local community.

Meet Beth and Kevin

Tomorrow is Thanksgiving, a day to reflect on all that we're thankful for. Many families go right from pumpkins and ghosts to holiday music and candy canes, without pausing to give Thanksgiving much attention. Consider this: What is most important to you today?

For Beth and Kevin, DSAW plays a significant role in the things for which they are thankful. Beth feels that "Today, DSAW is our family. There's no other way to say it." But it wasn't always that way. There was a time before DSAW. A time when they were left scared and confused. 

After utilizing several fertility experts, Beth and Kevin were "full of happiness and excitement" at their 5 1/2 month ultrasound. This mood quickly shifted as a specialist came in and "callously told us that they strongly believed the baby had Down syndrome. There was no congratulations, no small talk first, he showed no happiness for our baby or compassion for us as parents." They yearned for one "congratulations," one story of someone with Down syndrome exceeding expectations.

After their horrible diagnosis experience, Beth and Kevin knew that they were called to be Support Parents to other new and expectant parents through DSAW's Parent's First Call program. "It gives us so much happiness...to be able to pay it forward and to help make a Down syndrome diagnosis just a little less scary."

"There is so much focus put on having a 'perfect' baby. We want to share that this baby IS perfect, just as we all are in our own way." 

By supporting DSAW on Giving Tuesday, you can make it possible for us to train more Support Parents. To give more families a "congratulations" instead of an "I'm sorry." To change the narrative around a Down syndrome diagnosis. 

Today, I encourage you to think about how important our children and our families are. It's important to start off parenting a child with Down syndrome with hope and support. You can help give parents the unbiased information and the experience that they deserve by donating to DSAW on Giving Tuesday.

Warmly,
Dawn Nuoffer
Executive Director
Down Syndrome Association of Wisconsin

PS - As you scoop up big deals on Black Friday and Cyber Monday, consider donating your savings on Giving Tuesday. It's an easy way to give back!

Meet a DSAW Leader: Jessica

Hello everyone! My name is Jessica Raschka and I am the President of the DSAW-Central WI chapter. I got involved with our local chapter after deciding to start the process of adopting a baby with Down syndrome.

This is not where my journey of Down syndrome started. I have always been drawn to individuals with Down syndrome and that lead me to an education in special education. I worked as an ABA therapist in the MN school district. I had quite a few students on my caseload who had Down syndrome. I later went on to proving ABA privately in home for families. Along with ABA I started to advocate for families in IEP meetings.

In 2009 my husband and I opened a store for special needs kids and their families. We sold equipment for therapy, visual aids, adaptive equipment and toys. Sadly we had to close our doors.

We were blessed with four amazing kids who have special needs themselves. We have a rare chromosome duplication called Duplication 15q13.3. Our kids also deal with autism, epilepsy, OCD, sensory processing disorder and feeding issues. So when it came to adopting we were happy to look into special needs adoption. After much prayer we decided to pursue adopting a baby with Down syndrome. That's how on Aug. 6th we came to be parents to a special little boy that we named Corbin. We are now apart of the Lucky Few!!

Meet a DSAW Leader: Stacy

Hi everyone! My name is Stacy Schneider and I am an Advisory Board Member with DSAW-Green Bay. I became involved with DSAW shortly after my daughter Zoey was born in 2013. She has introduced me to a whole new world that I had previously been missing out on. Zoey has a younger brother named Zander, whom she adores, but also likes to show who’s boss at times. We have two miniature dachshunds named Deuce and Bella. I work full time as a Product Engineer for a contract furniture company that my husband Tony also works for as a Project Manager. Our family enjoys spending time together, going for walks, and watching movies.

Since the birth of our daughter we have met many different families and shared our experiences with each other by being involved with DSAW.  Last year I volunteered to help with the walk committee and enjoyed planning for our biggest fundraiser of the year. This year I became a board member and have helped organize playgroups, parents’ night out, a family movie event, and our first Strider Bike camp for younger kids. We had 12 campers attend a week long adventure to help them learn about balance and coordination. It was a blast!

Meet a DSAW Leader: Rachel

Hi everyone! My name is Rachel Reit, and I am the Programs and Communications Coordinator at DSAW. I work out of the state headquarters in West Allis. I started with DSAW in September 2016 as a Marketing and Communications intern, and I joined the staff in my new role in January of 2017! I graduated from Marquette University in May with a Master of Arts degree in Communication, and I have Bachelor’s degrees from Marquette in Communication Studies and Psychology.

I always have known that I want to spend my life helping others. It’s been my dream to work in the nonprofit sector, and I’m so thankful to be a part of the DSAW family! I spend most of my hours here working on planning events, marketing, and running the social media accounts for our five outstate chapters (Central-WI, Chippewa Valley, Green Bay, La Crosse, and Sheboygan). I also am working on outreach to areas of the state where there currently is no DSAW coverage. We hope to reach everyone in Wisconsin with our programs and services! I cherish the time I get to spend with the self-advocates, and I get overly excited to see cats and deer walk by my window. 

In addition to all of my beautiful friends with Down syndrome at work, my boyfriend’s older sister Sarah also has Down syndrome. She’s been making me laugh and supporting me for the last four years. She and all of my DSAW people encourage and inspire me every day. I am passionate about our mission, and I’m thrilled to be changing lives across the state of Wisconsin!

What do I do when I’m not at the office? I love hiking and camping, spending time with my family, reading, eating anything chocolate, having Disney sing-a-long sessions with my brother, and volunteering at my church.  

If you have questions, suggestions for events, or just want to say hi, feel free to email me at rachel@dsaw.org or give me a call at 414.327.3729 ext 104.

Creative Strategies for Walk Fundraising

By Andrea Finney, DSAW-La Crosse Walk Raffle Captain & Mom to Levi

Asking for help is a very difficult thing for me to do. I don’t like to ask for money, I don’t like to ask for people to pitch in, I even feel guilty about asking a babysitter to come over – and I am paying them! All ridiculous, I know… So when it comes to fundraising, I struggle. It is out of my comfort zone, but it’s something that needs to be done for our group to thrive. This year I am really putting our family out there to make a difference. We don’t really have a good support system in the way of asking family and friends for financial support, so we are thinking out of the box. How can I contribute to the group and how can I make a difference for my son and every other person in our community with Down Syndrome?

The words are hard for me, but I sure can put together an email! I made the decision that I wanted to be an integral part of putting together the raffle for the walk. This is one way that I can help to raise money. I can research, and I can send out tons of emails talking about our kids and asking for support in that way. In researching companies that make donations, other groups raffle strategies, I see many other opportunities for fundraising. When I narrowed that down to opportunities that are available LOCALLY, there really are a lot of options available.

I started thinking about team fundraising around World Down Syndrome Day. I work for a company that is pretty involved with community, so I thought I would start here. I spoke with our Human Resource department and I was able to get an approval for a special “Jean’s Day,” with the proceeds going to DSAW.  This day raised close to $350 on behalf of Levi’s Top Guns.

The fundraiser we were able to do that really got the kids involved was a carwash. My husband manages the Auto Value in West Salem, so this made sense to me. He is a car guy, his business sells car care products, and there is a steady stream of customers in and out of their parking lot. His store sponsored the supplies needed, I supplied the kids, and we raised almost $400 for our team. This was an event that Levi was able to participate in, so for me, that was a huge win. He is just 6 years old, but HE is raising money for HIS team! It was a great day, a great experience for him, and something we will continue to do in future years for our walk team fundraising.

Another opportunity we had with Auto Value was networking through the stores. This is a company with many locations in our area. So while a large sponsorship was not feasible for his store budget, he made the connections with other store managers. Everyone pitched in a little which was manageable for their charitable giving budgets, but it made a huge impact for an overall donation. He was able to collect $500 from 5 stores working together.

There are a lot of other opportunities that we are hoping to participate in over the months leading to the walk as well. As a group, there is a Brat Barn through Festival Foods, a “Save Ferris Day” at the Breakfast Club, and a ride through the Beer By Bike Brigade, to name a few. There are also opportunities through local restaurants to have a percentage of sales donated – Culver’s, Dairy Queen, and Arby’s are a few examples – minimal effort, major impact to our loved ones. It just takes a phone call to get the wheels in motion, and maybe a little manpower for a few hours on our parts. There are companies locally that “round up” for charities, there are chicken Q’s, or there are just utilizing your personal contacts. Utilizing them for monetary donations, or for product donations to be used for our raffle. Think of who you know… do you or someone you know do personal sales? Someone that manages or has connections at a local business? Someone that offers a service? These are all things that can bring in funding to sustain our chapter from year to year by way of the walk raffle.

This group has been such an important part of my family’s lives. The resources we have because of it, and the people we have met along the way. I want this to be available to our family for many years to come, and I want Levi and his friends to have endless opportunities because of the work this group does. To make that happen, we have to work at it. I am excited to be a part of this and make things happen and I look forward to finding new opportunities to make a difference!

Meet a DSAW Leader: Angel

Hi everyone! My name is Angel Benrud.  I am a member of DSAW’S  Lacrosse Chapter. I am married with four children, my oldest daughter Haley (22) is how I got involved with our local Down Syndrome group. When Haley was born in 1995 there were not a lot of resources in our area, and it was hard to find and meet others with Down Syndrome. Through the birth to three program I met 2 other families with a child similar in age as Haley, which provided us parents a chance to talk and trade information. I hope by continuing to be a part of the local DSAW chapter that Haley and I can pave the way for others. I want parents of youngsters to know that there are people here if they need help finding resources, answering questions or just talking!

I have been a part of our Down Syndrome Awareness Walk Committee for 12 years, and have been chair or co-chair for the last 4 years. My title right now is Walk Co-chair, although I do a little of everything. If there is something that needs to be done and I can do it, I will!  

My favorite part of being a part on the Walk Committee is taking a minute in the middle of walk to just stop look around and see all the people that come, donate and support. It's powerful knowing that I am making a difference!

Meet a DSAW Leader: Jenny

Hi! I am Jenny Levendoski, a member of DSAW-COTH-Greater La Crosse Area.  I attended my first Down Syndrome Awareness Walk (formally Steppin Up for Down Syndrome) in 2010.  It was the day I was released from the hospital, a week after giving birth to my beautiful daughter, Eliza.  She was unable to attend that first party due to her extended hospital stay but has more than made up for it now.  We are usually the first to show up and the very last to leave the party. 

I do not have an official title within our chapter, but I can say I do a little bit of everything. I have helped with the Down Syndrome Awareness Walk, organized social events, and organized speaker events. My current focus in on member engagement and collaborating with our amazing local non-profits.  Through these experiences, I met a wonderful group of individuals that I probably never would have met if we were not on this DS journey together.  Not only did these people become my friends, but also an amazing source of information. 

My dream for Eliza and her friends is for them to be happy, healthy, independent, and productive/included members of society. This is why I am an active member of DSAW-COTH-GLA! Not only do I believe individuals with disabilities should have the same opportunities as those without, but they should be fully included. 

Meet a DSAW Leader: Miriam

Hi! I’m Miriam Marting, a board member on DSAW-Wausau, which has recently become active. I first became involved in the Down Syndrome community when my daughter Laurel was diagnosed with Down Syndrome shortly after her birth in 2006. Laurel is blessed to have three older brothers ages 20, 18, and 12. Laurel likes to go swimming, spend time with her family, eat popcorn, and play outdoors.

When Laurel was born, we had a Down Syndrome support network where we lived in Indiana, so when we moved to Wausau in 2011, we were disappointed that there was no Down Syndrome network in Wausau. I had first heard about DSAW when I was living in Indiana in 2010. Having previously lived in the Fox Cities, we had heard that Rachel Coleman, the producer and personality behind Signing Times, was featured at DSAW-Fox Cities Down Syndrome Awareness Walk. We were excited to meet Rachel because of the role she had played in Laurel’s development.

It is rewarding to connect families and help them understand available resources as well as the joys of having a child with Down syndrome. I have a passion for people, networking, and connecting with others to make a difference. 

Meet a DSAW Leader: Joy

Hi, my name is Joy Bosch, and I am the Advisory Board President for DSAW-Sheboygan and Surrounding Counties. I was born and raised in the rural Mayville area. I am married to John, and together we have 6 children, 7 grandchildren, and grandchildren #8 and #9 arriving in 2017.

When my nephew was born with Down syndrome, I searched the internet to find more information about it and came across DSAW's website. We learned all about how we could organize a walk to help raise awareness and monies for the community. A few family and friends got together and did just that -- we were delighted to raise over $3,000 our first year! Through the years, many of the walk's founding members are still involved, and we have continued to involve new community members that have helped a lot! I am proud to be part of DSAW-Sheboygan & Surrounding Counties, and hope you will consider getting involved too.

Meet a DSAW Leader: Jennifer

Hi! I am Jennifer Trustem, a board member on DSAW-Fox Cities. I became active with DSAW and eventually a board member in 2013 after the birth of our daughter Dana. Dana was diagnosed at birth with Down Syndrome. Dana has 3 amazing older siblings, Tanner, Cael, and Jensen, who are her biggest cheerleaders! Our family enjoys fishing, camping, boating, and anything else outdoors. I work part-time as a speech language pathologist and Ben is a sales engineer.

I first became involved with DSAW-Fox Cities by volunteering with the walk committee. Through this experience, I met a wonderful group of individuals. Not only did these people become my friends, but also an amazing source of information as they had older children with Down Syndrome. I then became interested in becoming a board member. I realized what better way to know the resources available to Dana and have an impact on future resources than becoming actively involved. My dream for Dana is for her to be a happy, healthy, independent, and productive/included member of society. This is why I volunteer on the board! Not only do I believe individuals with disabilities should have the same opportunities as those without, but they should be fully included.

I do not have an official title or role with our chapter, but I can say I do a little bit of everything. I have helped with the Down Syndrome Awareness walk, organized social events, and organized speaker events. My current focus in on providing those with Down Syndrome fitness opportunities in the community by working with Neenah YMCA. 

Self-Advocate Corner: Michelle's Poetry

Enjoy a collection of poems from one of our amazing Self-Advocates, Michelle. Michelle is currently completely an internship at DSAW, where we are working on learning office work and management, as well as working on her poetry. 

smile
god made you smile
around you take the heart
to pray god everyday you are born
god make you smile

trust
trust in yourself each child
be proud yourself
you are born god made you this way
just a way you are love yourself trust
in your heart

proud
be proud yourself when you feel proud
make you smile feel hug yourself
be proud be your best friend yourself D
proud you are

love
love special way just a way you are
love yourself inside in your heart feel
special you are born special