"AnnaRose and Rachael are not special because they have Down syndrome; they are special for reasons much greater than that. Take a look.” -Lin Rubright
On March 21, 16-year-old AnnaRose Rubright boarded a train to New York City with her parents to join the National Down Syndrome Society (NDSS) at the first World Down Syndrome Day event at the United Nations. Anna considered staying back inNew Jersey to celebrate with her sisters, friends and teachers, who were all wearing t-shirts in honor of the day. But shortly after arriving, Anna received a text message that included a photo of two teachers wearing their t-shirts. Smiling and grateful for her advocates everywhere, Anna knew it was going to be a very memorable day.
This celebration of people with Down syndrome is something that we at NDSS promote daily. Through our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome, we support over 400,000 Americans with Down syndrome, their families, friends, teachers, coworkers and others who have chosen to make people with Down syndrome a priority.
It’s not just on World Down Syndrome Day, but every day, that the Rubright Family embodies the NDSS mission. Anna is the eldest of six girls. Her parents, Lin and Michael, received her diagnosis of Down syndrome in the hospital the morning after her birth. At that time, the Rubrights also learned that she had an Atrial Septal Defect, a repairable heart condition that occurs in many babies born with Down syndrome. Lin and Michael immediately started looking for answers to their questions and gathered resources both locally and nationally—they reached out to their local support group, spoke with other parents and contacted NDSS.
Despite what they did not know about parenting, let alone parenting a child with Down syndrome, they knew they would provide a loving and welcoming home for Anna.
NDSS has been connected to the Rubright Family since Anna’s birth, and this past year we were pleased to welcome the organization they founded, the Anna Foundation For Inclusive Education, into our affiliate network of over 350 local groups across the country. NDSS views each of our affiliates as a crucial partner that works hand in hand with us to implement our national initiatives on a local level.
Like many of our affiliates, the Anna Foundation serves the academic needs of students with Down syndrome learning in an inclusive setting and strengthens the roles of community members who include people with Down syndrome in all aspects of life. Anna’s journey has not always been easy, especially during her junior high school years, but she has set a path for herself that includes strict academic coursework (including Algebra and Geometry) and she dreams of an independent future—including college, employment, marriage and her own apartment.
These goals, once thought to be unattainable for people with Down syndrome, are well within Anna’s sights. This is due, in part, to the work of the NDSS National PolicyCenter. Through our advocacy efforts in Washington, D.C., coupled with local advocates who receive NDSS Advocacy Alerts and take action, thousands of people across the country are playing a role in changing policies and legislation to give more rights and benefits to those with Down syndrome at every stage of life.
As Anna prepares for her future, the Rubrights are beginning the journey again. Following the birth of four more daughters—Natasha, Becca, Kiley and Julia—Lin and Michael adopted Rachael, now seven, who also has Down syndrome.
Rachael is a free-spirited first grader who keeps the entire family on their toes with her abundance of energy. When Rachael was born, two NDSS affiliates approached Lin and Michael to help them find the right home for her, but the Rubrights decided they were it. By this time they knew a lot about parenting daughters, including one with Down syndrome, so they assumed they could put Rachael on the same path as Anna. The Rubrights quickly learned what we at NDSS and they themselves now try to convey daily—despite having Down syndrome, every person is a unique individual with a distinctive personality. Anna is more reserved and studious, while Rachael is an extrovert who loves to dance. The Rubrights’ experience in raising two daughters with Down syndrome who have different needs has increased their dedication to making a difference for people of all abilities in their community.
Each of the Rubright girls advocates daily for their bookended sisters and others with special needs. Natasha and Becca, in eighth and seventh grades, have classmates and friends of all abilities. Neither sister has set out to change the world but each aims to set a positive example in line with the NDSS mission of value, acceptance and inclusion—in this way, they are changing the world without even trying. Kiley and Julia, ages nine and eight, have followed in their sisters’ footsteps, and are committed to raising awareness about the many abilities of people with Down syndrome. We are energized by all four of Anna and Rachael’s sisters, and those like them, who spread positive public awareness messages in their communities.
The Rubright Family’s desire to help create a society where all people are accepted and treated equally led them to serve in leadership roles for their local Buddy Walk®, one of over 250 Walks that make up the NDSS National Buddy Walk Program. “Imagine having a daily struggle…then imagine being surrounded by 2,000 people you don’t have to convince to help, listen or believe,” Lin says about the event. “The day of the Buddy Walk and the support it shows is enough to empower us and renew our spirits for many months afterwards.”
NDSS is proud to offer a place to turn for support and accurate, up-to-date information about Down syndrome. NDSS prides itself on providing information, educational opportunities and tools for both affiliates and individuals looking to play a role on the local level. Together, we can all do what the Rubrights do – set out to lead by example, and ultimately change the world for people with Down syndrome.
On World Down Syndrome Day, the Rubrights gathered new ideas for the future; Lin and Michael knew that their attendance exemplified unity and commitment to their community while Anna, as a self-advocate, was motivated by the speakers with Down syndrome and took notes about goals she can attain and opportunities to which she can aspire. The Rubright Family is just one example of those who work with us towards our common goal. We admire their family values as well as their dedication to all members of their community who can benefit from the work of the Anna Foundation For Inclusive Education.
NDSS recognizes the significance of each part of the whole and each member of the greater Down syndrome community. We need your support in order to pursue our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. In turn, we hope you know that you can count on us to be a part of your lives each step of the way.
Your support and commitment is greatly appreciated.
Charles Gerhardt, III Jon Colman
Chairperson, Board of Directors President