NATIONAL ASSOCIATION FOR DOWN SYNDROME



NATIONAL ASSOCIATION FOR DOWN SYNDROME

Annual Report 2014-2015

The mission of NADS is to ensure that all persons with Down syndrome have the opportunity to achieve their potential in all aspects of life. We continue to carry out that mission by providing information, advocacy and support for people with Down syndrome and their families and by improving knowledge about Down syndrome within our communities.

Supporting Families

Here are some of the ways we have supported families over the last year:

Parent Support Program

Last year, NADS supported 24 families of newly diagnosed children with Down syndrome, including those who had received a prenatal diagnosis. In addition to providing resources and information to 207 non-parents, we provided parent support volunteers for 20 families and ongoing support services to over 476 families. We also trained 16 new parent support volunteers.

The Parent Support Program continues to provide parents with invaluable emotional and practical support. Here is the testimony of one new parent: “Seven years ago, I was assigned a Parent Support Volunteer… and she was a lifesaver, who I now can proudly call a “friend.” I continue to turn to her with any types of questions pertaining to Down syndrome… she was someone who also had a child with Down syndrome and had “been there”. . . She knew what to say to me, how to talk to me, to let me cry, to let me get angry and taught me how to educate myself about Down syndrome.”

Spanish Outreach

Of the new families we supported last year, 7 were Spanish speaking. We provided them with support and information about Down syndrome in Spanish. NADS is also connecting with families in their communities by having Spanish speaking family volunteers attend festivals and other community activities. Our website, which was redesigned this year, includes information in Spanish, and we are working to translate all of our educational materials. In an effort to increase our impact within the Hispanic Community, we made 72 family and professional contacts. Former Board Member B. Alvarez reflects: “I am so proud of the work we are initiating through NADS to provide information and services in the native language of a large, underserved community. As a support parent for Spanish-speaking families, I find this new service invaluable to making connections and letting families know: ‘We understand, we speak your language, and you are not alone.’”

More Than Down Syndrome

Years ago, we designed an annual Family Retreat to bring together families who have a child with Down syndrome and an additional diagnosis (such as Autism or ADHD) with experts who could help parents address the behavioral and medical needs of their child. A few years ago, we started offering the Family Retreat twice a year in order to serve more families and broadened the focus to include not just families of a child with a dual diagnosis but any family whose child has additional behavioral, communication, and/or medical needs. This year’s retreats served 39 parents, 19 children and employed 45 respite workers.

This program fills a real need for families. One family noted: “For our family it means so much to fit in somewhere. Our family is isolated and we don’t relate to the families with kids that just have Down syndrome and we don’t quite fit in to the autism community either. The experiences our families have are unique and sometimes a bit crazy and at the retreat our experiences are normal. It’s nice to be normal somewhere.” Another observed, “There is a feeling of kinship and bonding in our little group. It is a soft place to fall where you can talk openly, cry and laugh. You look around the room and see other parents nod their heads because they have been through it and understand.”

Educating and Informing

We are also committed to educating families about resources available to help them and to promoting awareness about Down syndrome within our communities. Here are some of the ways we have helped make knowledge available:

Publications

Over the last year, we published 6 editions of NADS News, which kept our membership informed about new developments and events in the Down syndrome community. We also re-designed our website, which newly launched on March 21, 2015 – World Down Syndrome Day. Our new website easily caters to every life stage and also provides a complete History of NADS. In addition, our website includes NADS en Espanol, through which Spanish speaking families can access information in their own language.

Public Speaking

Our public speakers reached over 5,648 people last year through their presentations. Here are some of the ways they brought information about Down syndrome into our communities:

Educating Medical Professionals

Through hospital in-services and other presentations, our trained public speakers continue to educate doctors, nurses, and other healthcare professionals about the capabilities of people with Down syndrome. This year, our speakers presented at 25 hospitals in the Chicago area and reached 895 medical staff. We also spoke at 9 universities and reached 474 students in the teaching and medical fields.

These presentations play an important role in raising awareness about Down syndrome within the medical community. Jennifer Parks, Associate Professor, Department of Philosophy and Director, Bioethics Minor Program at Loyola University Chicago, shares her observations about the impact of these presentations on her classes: “Since these volunteers, all parents of children with Down syndrome, have been coming to my classes, I have observed my students become much more thoughtful about their own views of and approaches to persons with Down syndrome . . . The effects of the NADS visits are already reaching beyond the classroom setting ... During the fall of 2009, a group of students did a final poster project on Down syndrome for their bioethics class, to raise awareness and eliminate some of the myths and misunderstandings surrounding it. That poster was publicly displayed on campus… a number of students decided to begin volunteer work at Misericordia or with Loyola’s Best Buddies program, because they were so struck by the presentations in class. I just wrote a letter of recommendation for a student who is applying to law school so that in the future she can work to defend the rights of persons with Down syndrome. These are a few examples of the positive changes that have occurred through the consciousness-raising efforts of NADS.”

Public Awareness Speaking Program

Our trained public speakers go into communities throughout the Chicago area and give presentations about Down syndrome. They promoted Down syndrome awareness at over 36 community locations, including elementary and junior high schools, reaching 4,279 students, employees, and case workers. 7 new public speakers were trained.

Self-Advocate Speaking Program

We’ve continued to develop individuals with Down syndrome to become public speakers. They go out into the community, appearing at local fundraisers, speaking to other non-profit organizations, and participating in hospital presentations. They spoke at 46 out of 70 events last year.

Program Development

During this fiscal year, the Partnership Advocacy Council was developed. The National Association for Down Syndrome Partnership Advocacy Council (PAC) is a service leadership organization led by adults with Down syndrome and works in partnership with the National Association for Down Syndrome Board. (NADS). The PAC focuses on service, leadership, outreach and advocacy. Self- advocates will participate in NADS activities, plan and run their own events and fundraisers, form committees, promote awareness, and work collaboratively with The National Association for Down Syndrome Board. All participants will expand their leadership skills to become caring leaders through service. This Council is inclusive of all adults (18 and older) with Down syndrome who want to be involved.

Partnership with Dads appreciating Down Syndrome

NADS continues to support Dads Appreciating Down Syndrome (DADS). Approximately 85 Dads and family members participate at the 10 events and meetings held throughout the year. They keep in constant contact with 91 individuals via email and have recruited 7 new members. Additionally, they participated in one carnival night for PALS of Elmhurst College.

Financial Statement

Year Ended June 30, 2015

|Revenue | |

|Public Support and Other Revenue | $ 143,255 |

|Fund Raising | $ 98,010 |

|Donated Rent and Services | $ 0 |

|Investment Income | $ 755 |

|NADS Conference |$ 24,099 |

| | |

|Total Support and Revenue | $ 266,119 |

| | |

|Expenses | |

|Program Services | $ 276,238 |

|Management and General Admin | $ 28,762 |

| | |

| | |

|Total Expenses | $ 305,030 |

| | |

|Change in Net Assets | $ (38,911) |

| | |

|Unrestricted Net Assets | |

|Beginning July 1 2014 | $ 304,375 |

| | |

|Ending June 30 2015 | $ 265,464 |

NADS Officers and Directors

2014-2015

President Steve Connors

First Vice President Sarah Alzamora

Second Vice President Bridget Brown

Treasurer Katie Wood

Recording Secretary Andrea Caruso

Directors

Nancy Andrade

Erin Dominiak

Anne Haddad

Kathy Miczuga

Nancy Miner

Deb Mirabelli

Michelle Pusatera

Al Understall

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