From Down Syndrome World^TM 2021 Issue 1 of 4

WITH IRON WILL & DETERMINATION, FLORIDA ATHLETE MAKES HISTORY

 This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

WHEN MANY OF US HEAR THE WORDS “IRON MAN,” we might think of the rich Marvel hero in a flying suit. For the 21-year-old athlete, Chris Nikic, “Iron Man” means he can do anything he sets his mind to. In November of 2020, Chris became the first individual with Down syndrome to complete an Ironman triathlon competition, earning him a coveted spot as a GUINNESS WORLD RECORDS® holder as ‘First person with Down’s syndrome to complete an IRONMAN® triathlon.’

The Ironman consists of a 2.4-mile swim, a 112-mile bicycle ride, and a 26.22-mile run. In the world of triathlons, this is considered to be one of the most challenging one-day events. Chris made history by competing in and finishing the race, and serves as an inspiration to the Down syndrome community and the world.

An ambitious attitude, drive, and family support have been the driving forces to propel Chris to new and more extraordinary accomplishments.

“I want to be a world champ at something!” Chris added to his list of New Years’ Eve goals in 2018.

Chris and his father Nik did research and some soul searching to determine that the Ironman triathlon was the way Chris would accomplish that. Nik, who is also an athlete, was ready to train for, and compete in, the triathlon with his son.

Nik made sure Chris was ready to put in the work. “I told him, if you sit on the couch playing video games, you will never get your dreams,” says Nik. “But if you work hard to accomplish your goals, you can do an Ironman and become a motivational speaker.”

After Chris set his intention to compete in Ironman, there was no stopping him. Little did he know what would continue to unfold after successfully completing this intense race.

A FORCE TO BE RECKONED WITH

Chris trains with the mindset of becoming 1 percent better every day. “I built my core 1% at a time. A year ago, I started by doing one push up, one sit up, and one squat. Then every few days, I did a little more,” Chris tells. “Eventually, before Ironman, I was doing 200 of each plus weights, pull-ups, and other strength exercises.”

Chris trains from 3 to 8 eight hours per day, with some stretching and recovery in between. He runs, bikes, swims, and completes strength training four times a week. On the weekends, training is kicked into even higher gear, “I’ll put in 6-8 hours of training each day when I do my 100-mile bike rides, and 18-mile runs.”

Chris’ training is not just physical. His dedication requires a lot of mental strength training too. Chris maintains that anything is possible as long as he can get 1 percent better each day. This mentality helps him stay focused and enjo y his training more.

If Ironman training wasn’t already hard enough, Chris had t o deal with the threat of COVID-19. He admits that training during an unprecedented worldwide pandemic was more challenging, but he wasn’t going to let that get in his way. “There were no gyms to work out in, no lakes to swim or bike trails to ride on,” Chris explains. “So we found ways to train in my home, pool, and neighborhood. It was much harder and less fun, but we found a way to do it anyway.”

THE FOUNDATION OF COMMUNITY

Throughout his training process, Chris had great support from h is family, friends, and community organizations.

Chris and his dad Nik started with intensive training sessions, but when Nik got injured, he decided he was not going to compete in the race and shifted his efforts to being the best coach and cheerleader for Chris.

“Some days, it felt too hard, and I felt like I couldn’t do it,” Chris recalls. “But my dad kept reminding me of my dreams and how important it is to fight for your dreams.”

Chris joined a triathlon club and was paired with a special training coach through the Special Olympics. “My guides at Special Olympics, Simone and Dan, made it fun and helped me through my journey to compete,” Chris tells. “My family and friends were there every step of the way. I thank God for all the special angels he brought into my life.”

“Watching Chris cross that finish line with a huge smile on his face was a moment I will never forget,” says Patty, Chris’ mother. “Seeing your child accomplish something they have worked so hard for is something every parent dreams
of experiencing.”

Chris’ impressive athletic accomplishments have been recognized around the world. His story was featured in national media everywhere including outlets like ESPN, New York Times, Today Show, CNN, NBC, Sports Illustrated, and more.

Special Olympics named Chris a Champion Ambassador, invited him to compete in the USA games, and honored him with the Florida Hero award where he met the state’s governor Ron DeSantis. Ironman gave him the title of Global Ambassador and invited him to Hawaii for the next Ironman competition.

When asked how all of this feels, Chris responded with a simple “I am living my dream.”

HIS SPECIAL MESSAGE FOR THE WORLD

“People have been telling us our whole lives what we can’t do,” says Chris. “And I want to tell you to stop listening to those opinions because they are wrong. We are capable of so much more. Yes, we have disabilities, but we also have big abilities.”

Chris wants to share his experiences and message with the world. He is working on publishing a book this year and he has secured several public speaking events with companies like Dell and Microsoft.
To encourage other athletes in his community, Chris has also launched his own “1% Better Challenge” to promote Down syndrome awareness. The process is simple. Partner up with a sponsor (friend, family, coach), set a 30-day goal you want to achieve, and post your progress with your partner on social media.

“I want to inspire others the way that my community has inspired me. The inclusion revolution is real! Nothing is too big to accomplish or too challenging to do if you commit to being 1% percent better every day.”

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The Global Down Syndrome Foundation Educational Grants are a benefit for GLOBAL organization members. The Grants are a direct result of surveys sent to many local Down syndrome organizations and feedback from DSAIA Leadership Conference workshops. The surveys and feedback underscored the importance of local educational programs towards creating a brighter future for people with Down syndrome. The Grants go directly to Down syndrome organizations to host educational programs for self-advocates, medical professionals, teachers, and parents, and beyond. The Grants will provide parameters to ensure that such educational programs are successful and sustainable.

2019 Awardees

In 2019, GLOBAL awarded $75,000 to twelve of its member organizations, bringing the total given through its Educational Grants program to over $625K. Since 2012, GLOBAL has awarded grants to 72 innovative educational programs developed by local, national and international Down syndrome organizations. View the announcement. 

• Alaska Down Syndrome Network (Anchorage, AK) “Alaska Regional Conference” will bring families from rural and small towns to Anchorage for a weekend conference to gain more knowledge on medical issues, behavioral issues, and education topics as well as connect with other area families.
• Down Syndrome Association of Greater Cincinnati (Cincinnati, OH) “Caring for the Adult with Down Syndrome” will bring medical experts to Cincinnati Children’s Hospital Thomas Center for Down Syndrome for Grand Rounds presentations to introduce medical professionals to the newly revised Medical Care Guidelines for Adults with Down Syndrome.
• Down Syndrome Association of Indiana, Inc. (Indianapolis, IN) “Public Policy 101” is a series of live workshops and webinars which will cover a variety of topics related to preparing participants to take action on public policy issues, such as how to contact your local legislator, current issues facing families of children with Down syndrome, and more.
• Down Syndrome Association of Memphis & the Mid-South (Cordova, TN) “Individual Education Plan (IEP) Coaching/Seminar” will bring educational experts to the Memphis area for a monthly seminar to give parents and teacher the tools and knowledge necessary to have successful IEPs.
• Down Syndrome Association of Middle Tennessee (Mt. Juliet, TN) “Extraordinary Lives Conference” is a one-day conference that will bring in national and regional professionals to share their expertise in the latest research and best practices for helping those with DS through three tracks for educators, caregivers, and self-advocates.
• Down Syndrome Association of Minnesota (St. Paul, MN) “Statewide Learning Conference” is a weekend conference that will inspire and equip parents and individuals with Down syndrome with the most up to date information, research, and best practices in healthcare, inclusive education, community integration, and economic self-sufficiency.
• Down Syndrome Association of the Valley (Boardman, OH) “Summer Enrichment Program with Aaris Therapy” is a comprehensive weeklong program where participants with Down syndrome will concentrate on effective communication and improving social skills to help build important learning skills in the education process.
• Green Oaks Education and Support, Inc. (Arlington, TX) “Improving Health and Wellness through Education and Practice” is a two-part program involving an interactive cardio workout for people with Down syndrome to improve their level of physical activity and an educational series for caregivers to promote health in the home.
• Hearts2Honduras, Inc. (El Progreso, Honduras) “Love and Learn 21 Program” is designed to provide educational opportunities for people with Down syndrome in Honduras. Teachers will partner with participants and their families to create individualized plans in an effort to meet the needs of each student.
• Inclusion Connections (Olathe, KS) “EmployAbility” provides the educational opportunities and vocational training needed for young adults with Down syndrome and other developmental disabilities to acquire the necessary skills and knowledge required to obtain paying jobs.
• KIIDS, Inc. (Bellmawr, NJ) “Pathways to Independence” will consist of a series of workshops, each with a specific focus and aligned with the long-term goal of establishing skills and knowledge to enable middle and high school aged people with Down syndrome to successfully navigate the choices, freedoms and challenges that come along with the transition to teen and adulthood and to become as independent as possible.
• Little Leaf Learning Center, Inc. (Omaha, NE) “Operation School Success” is designed to assist families and children with Down syndrome in their transition from pre-school classes into kindergarten. This includes IEP training, education on rights, legal counselling, and parent to parent discussion groups for parents.

2018 Awardees

In 2018, GLOBAL awarded $74,912 to nine of its member organizations, bringing the total given through its Educational Grants program to over $550K. Since 2012, GLOBAL has awarded grants to 60 innovative educational programs developed by local, national and international Down syndrome organizations.View the press release. 

• ACDS (Plainview, NY) “Breakfast Club” will provide free informational material to children and adults with Down syndrome, their parents, caretakers and professionals. Topics anticipated include developing a support system, potty training, advocacy, using technology, managing challenging behavior and more.
• The Cedars of Marin (Ross, CA) “Healthy Living Education Program” will help educate the residents and day program participants at Cedars about health and wellness. The program will offer engaging learning activities for participants with the goal of improved nutrition and physical activity.
• Down Syndrome Albania Foundation (Tirana, Albania) “The ABC of Inclusion” will promote the best practices for inclusive education by exchanging experiences and strategies on functioning and development from three Balkan countries: Albania, Kosovo and Macedonia. The program will also help increase the quality of inclusive education by improving the curriculum for first grade students.
• Down Syndrome Foundation of Greater Richmond (Richmond, VA) “Moving On!” is an adult program that will develop key skills needed to explore the possibility of living independently for adults with Down syndrome. It will teach the life skills needed to live independently in their current family home and how to become equal contributors to their household or in the community.
• Down Syndrome Association of Greater St. Louis (St. Louis, MO) “Silver Steps: Support Services for Caretakers of Aging Adults with Down Syndrome” will expand upon the current Silver Steps program to provide a series of workshops offering concrete resources and services for caregivers.
• Down Syndrome Guild of Dallas (Richardson, TX) “First Call” program will provide training to parents who have a child with Down syndrome to talk with and mentor new families expecting a child with Down syndrome.
• Down Syndrome Network of Montgomery County (Rockville, MD) “Techniques for Success” is a yearly conference providing education strategies for students from preschool to high school with Down syndrome. Attendees include general and special education professionals, paras, administrators and home schooling parents.
• Down Syndrome Partnership of North Texas (Fort Worth, TX) “NetSmartz: Staying Safe with Social Media” will use a hands-on curriculum to teach individuals with Down syndrome, parents, caregivers and professional educators about online/social media safety. It will use a version of NetSmartz that has been adapted to appeal to and educate individuals with Down syndrome and other IDDs.
• GraceSigns (Tiburon, CA) “Sign Me a Sentence” will be new app available to children with Down syndrome and other IDD with a focus on teaching approximately 20 key phrases in sign language in verbal and auditory form.

2017 Awardees

In 2017, the Global Down Syndrome Foundation awarded $75,250 to nine organizations in eight states through GLOBAL’s membership grant program.  The grants were announced at the NDSC Annual Convention which attracted nearly 4,000 attendees in Sacramento, CA. To date, GLOBAL’s membership Educational Grant program has provided over $475,000 to over 50 programs developed by Down syndrome organizations across the nation. View the press release. 

• Connecticut Down Syndrome Congress (Meridan, CT) “Open Books Open Doors” provides free literacy assessments and skill development for children with Down syndrome, as well as resources for parents and teachers regarding best practices in literacy instruction.
• Down Syndrome Association of Central Florida (Winter Park, FL) “Entrepreneur Academy” is intended for teens and adults with Down syndrome who are interested in starting their own micro-enterprises. The program will teach and empower individuals on business ventures and conclude with an entrepreneur showcase.
• Down Syndrome Association of Central New Jersey (Ewing, NJ) “I Can Ride and I Can Swim” is a health and wellness camp that will allow individuals with Down syndrome to gain skills in biking and swimming.
• Down Syndrome Association of Delaware (Middletown, DE) “Employment Readiness Training Workshop” is for teenage and adult self-advocates along with their parents and guardians focusing on how to find a job and the necessary life skills for employment, such as time management, communication, interview processes, work ethic, and more.
• Down Syndrome Association of Jacksonville (Jacksonville, FL) “Career Solutions, Working Towards Success Workshop” is an employment readiness course offered to young adults with Down syndrome working towards a goals of employment after graduation. Participants will be taught professionalism, teamwork, networking, problem solving skills, and more.
• embraceKulture (San Francisco, CA) “Parent Skills Training for At-Home Intervention in Uganda” is an educational program designed to train parents in skills to deliver intervention at home, specifically an emphasis on cognitive and social skills to achieve academic goals and improve parent-child interactions.
• Gigi’s Playhouse El Paso (El Paso, TX) “Medical Symposium for Individuals with Down Syndrome from Birth to Adulthood” is a yearly conference that will address the medical and mental health needs of individuals with Down syndrome by bringing in experts to educate and inform professionals and families.
• Gigi’s Playhouse Milwaukee (Milwaukee, WI) “One-On-One Math Tutoring Program” will pair students with Down syndrome with tutors in individually scheduled sessions to build upon their math skills such as shapes, fractions, measurement, time, money, and data.
• Triangle Down Syndrome Network (Raleigh, NC) “Specialized Learning Series” will work with parents and caregivers on how to teach their children with Down syndrome reading, math, and writing in a systematic instructive way with trained professionals. After instruction, families will practice learned skills with their child in a classroom sample setting with trained educators.

2016 Awardees

In 2016, the Global Down Syndrome Foundation awarded $92,200 to eleven organizations in eleven states through GLOBAL’s membership grant program.  The grants were announced at the NDSC Annual Convention which attracted nearly 4,000 attendees in Orlando, FL. To date, GLOBAL’s membership Educational Grant program has provided $400,000 to over 40 Down syndrome organizations across the nation. View the press release.

• Phoenix Children’s Hospital Foundation (Phoenix, AZ)
  “Family Education Events through the Pediatric Down Syndrome Clinic” will be a monthly workshop lead by the medical team at the clinic to educate parents and family members of children with Down syndrome to better understand their medical needs, discuss at-home care, and navigate the state education system to obtain education resources.
• Down Syndrome Connection of the Bay Area (Danville, CA)
  “Future Connections” is a tool designed to assist adolescents and young adults with Down syndrome in identifying their preferences, interests, and needs. It is intended to be used in collaboration with families and caregivers in order to implement effective life planning.
• Gold Coast Down Syndrome Organization (Boyton Beach, FL)
  “Best Start” is a year-long weekly education workshop for parents and children. Separated into two distinct sessions, the program will give self-advocates and parents the tools to aid them in academic, social, communication, creative, and personal success.
• Down Syndrome Association of Central Kentucky (Lexington, KY)
  “DSACK Learning Program Level 2” will expand their current Learning Program to serve older students ages 8-12 and their parents. The Learning Program is parent/child focused and empowers parents to teach their children literacy, math, and other skills.
• Down Syndrome Association for Families of Nebraska (Lincoln, NE)
  “DSAF of Nebraska 2016 Educational Conference” provides accurate and up to date information on best practices in the field of Down syndrome to parents, educators, medical professionals, and direct service professionals across the state of Nebraska annually, with a focus on education and behavior in children with Down syndrome.
• Down Syndrome Foundation of Southeastern New Mexico (Roswell, NM)
  “Down Syndrome Education & Medical Conference” will enlighten and educate the community about available research and medical care, and connect parents and medical professionals. This will extend upon their current annual conference and allow them to bring in medical professionals as speakers and panelists.
• Down Syndrome Association of Hudson Valley (Hopewell Junction, NY)
  “BEST: Behavioral Education Support Team” is a workshop and home based therapy program to educate parents and caregivers on the value of teaching appropriate behavior to children with Down syndrome with the assistance of Applied Behavior Analysis.
• Down Syndrome Association of Greater Charlotte (Charlotte, NC)
  “DSAGC Together in Education” is a two component program with an in-school portion providing training, support, and resources to Down syndrome specialists in the Greater Charlotte school districts, and a two-day conference for educators, service providers, and families.
• Designer Genes of North Dakota (Bismarck, ND)
  “Pathfinder Parent Involvement Conference” will collaborate with Pathfinder Services of North Dakota to add a specific track to educate families and medical professionals about issues relating to school-aged individuals with Down syndrome during their annual conference.
• Down Syndrome Association of Central Ohio (Columbus, OH)
  “The Learning Program Online” will expand the current online Learning Program to a full year and add a second level for school-aged children with Down syndrome and their parents.
• Down Syndrome Association of Wisconsin (St. Francis, WI)
  “Young Leaders Academy” is a program designed to help teens and young adults with Down syndrome build skills that lead to employment readiness and the ability to live and work independently in the community.

2015 Awardees

Eight educational programs are receiving grants varying from $7,500 to $10,000, totaling $75,300. The eight local Down syndrome organizations were announced at the 2015 National Down Syndrome Congress Annual Convention in Phoenix.

Grant recipients detailed their ideas, budgets and goals for educational programs as part of their applications, which were reviewed for thoroughness, potential, diversity and sustainability. More than 90 applications have been submitted through the program. View the press release.

• Down Syndrome Indiana (Indianapolis) – “State-wide Down Syndrome Conference” will provide accurate and up to date information on best practices in the field of Down syndrome to parents, self-advocates, educators, medical professionals, and direct service professionals across the state of Indiana.
• Down Syndrome Alliance of the Midlands (Omaha, Neb.) – “Heartland Genetics Services Collaborative’s Care Coordination: Empowering Families” will provide parents with the skills, knowledge, and resources they need to coordinate care for children with genetic conditions in partnership with a medical home.
• Down Syndrome Association of Greater Cincinnati (Cincinnati) – “Summer Enrichment Classes” is a supplemental academic program for children with Down syndrome, ages K through 8, to work in small groups with certified special education teachers and teaching assistants on reading and math skills.
• Down Syndrome Association of Greater St. Louis (St. Louis) – “DSAGSL Employment Initiative” offers a unique, grassroots, person-centered program option for career exploration and skill development that is specific to individuals with Down syndrome.
• Down Syndrome Association of Jacksonville (Jacksonville, Fla.) – “Community Inclusion and Vocation Aptitude Program” will provide individuals with Down syndrome, between the ages of 16 and 30, with an 8 week program targeted at developing the adaptive skills needed to live independently in a safe and socially responsible manner.
• Down Syndrome Association of West Michigan (Grand Rapids, Mich.) – “The Learning Program” is a supplement to traditional education for children with Down syndrome. DSAWM will offer Level 1 of TLP, which builds on traditional education through development of literacy, math, motor and speech skills.
• Down Syndrome Network Arizona (Tempe, Ariz.) – “Life’s Journey…with Down Syndrome” is a workshop providing parents the tools they need to effectively teach their children with Down syndrome important topics like behavior, thriving in adulthood, reading, health and wellness, and prenatal topics.
• Red River Valley Down Syndrome Society (Paris, Texas) – “Johnny Stallings Recreational REACH (Raising Expectations and Creating Hope)” will provide adults with Down syndrome classes on cooking, living independently, reading, money management, emotional and social skills.

2014 Awardees

Nine educational programs are receiving grants varying from $5,000 to $10,000, totaling $77,500. The nine local Down syndrome organizations were announced at the 2014 National Down Syndrome Congress Annual Convention in Indianapolis. View the press release.

• Club 21 Learning & Resource Center (Southern California) — “Equipping Educators” will provide funding for substitute teachers so that 50 general education teachers can attend training on inclusion and addressing the needs of students with Down syndrome.
• Down Syndrome Alliance of the Midlands (Nebraska and Iowa) — “Down Syndrome Education Series for Parents” will help parents of children with Down syndrome be better equipped to participate in their students’ education, work more effectively with their school districts, and prepare for transitions.
• Down Syndrome Association of Delaware — “Adult Down Syndrome Clinic” will be a new program initially serving five patients per clinic with a goal of 100 unique patients over the first three years. Funding will help provide education to the physicians and staff at the clinic while mirroring some of the successful Adult Down Syndrome Clinic models found across the country.
• Down Syndrome Awareness Group of Baton Rouge (Louisiana) — “Second Annual Down Syndrome Conference” will be an expanded version of the group’s first successful conference, allowing for a dance for people with Down syndrome and more education and networking opportunities for medical professionals, parents and children with Down syndrome.
• Down Syndrome Community (Seattle) — “Learning Program – Level 1 Pilot” will supplement traditional education, focusing on parents as first teachers for their children. Level 1 focuses on skill development for literacy, math, language and fine motor skills.
• Down Syndrome Foundation of Southeastern New Mexico  — “Education Workshop” is intended to build upon the success of previous workshops to reach over 150 school administrators, teachers, therapists, auxiliary staff and parents and provide valid research and techniques in educating students with Down syndrome.
• Gold Coast Down Syndrome Organization (Florida) — “Get a Life!” will be a monthly program geared toward transition-age individuals who have Down syndrome to give them and their families the tools for developing a full life in the community as adults.
• Montana Down Syndrome Association — “Resource Connection” will provide a unique resource library offering books, curriculum materials, adaptive equipment and play materials that can be loaned to families of people with Down syndrome.
• Up Side of Downs of Northeast Ohio — “Mind Body Soul Adult Mini-Conferences” will be two half-day events for adults with Down syndrome that provide a series of hands-on activities such as photography, makeup and party planning, as well as life-skills topics like safety, technology, money management and other critical issues for daily living.

2013 Awardees

In 2013 more than 50 applicants detailed their ideas, budgets and goals for educational programs as part of their applications, which were reviewed for thoroughness, potential and sustainability.

• Down Country (Missouri, Illinois, Iowa) — “I Learn / I Speak / I Care” is designed to give rural residents access to cutting-edge education and information through workshops, and provide technology to rural schools.
• Down Syndrome Association of Brazos Valley (Texas) — “Keys to Success” will create a computer training program, including a computer lab, to help students with Down syndrome acquire computer skills for everyday life, as well as job security and independence.
• Down Syndrome Association of Central Florida — “Global Down Syndrome Regional Seminar Series” will be a quarterly program for self-advocates, their families and medical professionals in various locations across central Florida.
• Down Syndrome Association of Central Oklahoma — Full-day workshops will serve as learning tools for parents who have children with Down syndrome in hopes of empowering them to advocate strongly for their children at school, in extra-curricular activities and in the workplace.
• Down Syndrome Association of Greater Richmond — “Learning Program” will provide programming for children with Down syndrome ages 4 to 7, supplementing their formal instruction in school with additional help in literacy and math.
• Down Syndrome Association of Memphis & the Mid-South — “Self Advocate Council Delegation” will help people with Down syndrome to have a voice and to speak up for themselves by preparing PowerPoints for public speaking, planning their own social events, and planning volunteer efforts and fundraising ideas.
• Puerto Rico Down Syndrome Foundation — “Increasing Access” will be an educational pilot program for adults with Down syndrome that involves developing a curriculum and helping at least 20 adults with reading, writing and math skills.
• Red River Valley Down Syndrome Society (Texas) — “After School / After Work Recreation Center” will build academic, emotional and social skills for people with intellectual disabilities and their typical peers through enrichment classes, workshops and peer interaction.

2012 Awardees

In 2012, more than 30 grant proposals were reviewed for thoroughness, potential and sustainability. Six grant recipients were announced at the National Down Syndrome Congress Convention in July 2012:

Testimonials

Here is what some of the initial grant recipients have said about the program:

“The grant’s national recognition allows us to promote and showcase the program as not only a collaboration with our county school district, but also with national partners.”

“These dollars are making a difference all over the US and in both rural and urban areas.”