Dear North Carolina Down syndrome community,

I hope this message finds you all in good health and spirits. It is with mixed emotions that I write to you today. For the past seven incredible years, it has been both my privilege and joy to serve as part of your community and lead the NCDSA (North Carolina Down Syndrome Alliance). I have cherished every moment of this journey, and now I have some exciting news to share with you.

I have accepted a new opportunity with a national Down syndrome organization, and as a result, I will be passing on the torch of leadership at the NCDSA. This decision has not been made lightly, and it comes with a heart full of gratitude for your unwavering support, belief in my vision, and the financial assistance you’ve provided throughout these years.

During my tenure, I have had the privilege of witnessing the remarkable growth of our community. I’ve seen your children grow, overcome obstacles, and become productive adults who live independently and thrive in integrated and competitive employment. I’ve had the honor of standing beside many of you as a guide through life’s challenges. I’ve watched with immense pride as our Buddy Walk evolved into the incredible success it is today. I’ve had the pleasure of working alongside dedicated board members, and I have full confidence that our board of directors will ensure a smooth and effective transition.

I want to express my deepest gratitude for welcoming me into your circle all those years ago. The impact you’ve had on my life is immeasurable. Leading the NCDSA and witnessing its growth has been an honor I will forever treasure. The friendships I’ve gained are invaluable, and I am confident that the legacy I leave behind will continue to flourish under new leadership. The NCDSA is still going strong, and I’m excited to witness the incredible journey it will continue on in the future.

So, this is not a final farewell, it is a “see you later.” I am excited to watch the continued success of the NCDSA and remain connected with this extraordinary community. Thank you for everything, and until we meet again, let us continue to work together to make a positive impact on the lives of those we serve.

With heartfelt gratitude,

Christina Reaves

Dear families, supporters, and friends of the NCDSA, 

 The Board of the North Carolina Down Syndrome Alliance wishes to extend its deepest gratitude for the seven-plus years that Christina has been with us, most of those as Executive Director. Under Christina’s leadership, we have grown so much: from a regional to a statewide organization, from a small office to a bright and cheerful program space, and from a support system mostly helping new families into a source of advocacy, support, and empowerment for the lifespan of individuals with Down syndrome. Without a doubt, Christina has been a key factor in the success of NCDSA. Her relentless drive and passion have motivated, encouraged, and challenged us all to achieve more. 

 While it’s bittersweet to lose Christina as our Executive Director, we are thrilled to see her take the next step in her career. You, the community, have our assurance that this transition will be as seamless as possible. We’ve hired an Interim Director, Amy Van Bergen, whose decades of experience will keep operations running smoothly during the transition. Staff, programming, and advocacy efforts will carry on normally. The board has already begun the search for a new Executive Director and is excited about this new chapter for the organization. 

 We look forward to seeing you at the Triangle Buddy Walk on October 22, 2023, at Sugg Farm in Holly Springs, NC. This walk will be Christina’s last public event as Executive Director. We can’t think of a more fitting tribute to her time here than to help make this the largest and most successful Triangle Buddy Walk yet. 

 If you have any questions, comments, or feedback regarding the transition, we invite you to contact us at asktheboard@ncdsalliance.org. 

 Thank you, community members, and thank you, Christina! 

The NCDSA Board of Directors 

The 23rd Annual Buddy Walk raises funds to provide resources to North Carolina individuals with Down syndrome and their families.

Raleigh, NC —The North Carolina Down Syndrome Alliance is hosting the 23rd annual Buddy Walk to raise funds to provide programming and resources to individuals with Down syndrome throughout North Carolina This year, the walk will be held on October 24th at Panther Creek Highschool in Cary, NC 1:00 to 5:00pm.

Continue reading “NC Down Syndrome Alliance to Hold 2021 Buddy Walk October 24th in Cary”

North Carolina Down Syndrome Alliance (NCDSA) is an effective, compassionate, and comprehensive resource on Down syndrome throughout North Carolina. NCDSA envisions a culture in which all people with Down syndrome are empowered to achieve their full potential and live healthy, productive lives as valued citizens within the fabric of society. NCDSA has a robust New and Expectant Parent Program and Medical Outreach Program as part of the North Carolina First Call Program, a program free of charge. NCDSA provides accurate, up-to-date, unbiased information about the realities of raising a child with Down syndrome in the 21^st century. NCDSA works diligently to dispel the antiquated myths associated with Down syndrome. NCDSA arms health care providers who deliver a prenatal or postnatal diagnosis of Down syndrome to a family with information that paints a truer picture about their family’s future. NCDSA provides new parents with crucial information as well as pairs them with trained parent mentors who walk beside them on their new path in life.

NCDSA believes children with Down syndrome living in North Carolina benefit from Early Intervention Services that provide supports during critical developmental years. Early Intervention Services lay the foundation for building a solid beginning to a child’s education. An education that includes learning beside their peers without disabilities and prepares them for life after high school. NCDSA works to advance the interests of adults with Down syndrome to live and work in the community, often with supports provided by state funded services. When supports and services benefiting people with Down syndrome are fully funded and made available to families, quality of life and healthcare outcomes improve for people with Down syndrome.

To that end, NCDSA believes by providing accurate, up-to-date information about Down syndrome and funding supports and services to benefit people with Down syndrome across their lifespan, people with Down syndrome can achieve a full and productive life. North Carolina House Bill 453 titled Human Life Non-Discrimination Act/No Eugenics was crafted without consultation of NCDSA. The Staff and Board of Directors of NCDSA is committed to the Down syndrome community and is encouraged by other initiatives that work to directly impact the lives of people with Down syndrome in North Carolina. Subsequently, NCDSA encourages its supporters and allies to work to strengthen the programs designed to provide a dignified and substantial future for people with Down syndrome living in North Carolina.

UPDATE 3/11/21: Individuals with Down syndrome may receive the COVID-19 vaccine beginning March 17th as part of Group 4

We have been heard – thank you for your advocacy

North Carolina Down Syndrome Alliance update on Call to Action: Governor Roy Cooper announced new vaccine priority guidelines that include people with Down syndrome in both Group 1 and Group 4.

NC Department of Health and Human Services decision-makers recognize people with Down syndrome are appropriately considered in Group 1 with the broader definition of long-term care to include long-term home care settings. Adults with Down syndrome receiving supports and services in their homes are immediately eligible for vaccination in Group 1. Group 1 now reads:

It also includes people receiving long-term home care for more than 30 days including Home and Community Based Services for persons with intellectual and developmental disability, private duty nursing, personal care
services, and home health and hospice.

Beginning March 24^th, adults with Down syndrome will be eligible for vaccination in the first phase of Group 4 if they do not qualify under Group 1. Group 4 now prioritizes the inclusion of the Centers for Disease Control’s (CDC) list of conditions at increased risk for severe illness due to COVID-19. The CDC added Down syndrome to the list in December, 2020.

Please refer to updated versions of Deeper Dive Group 1 and Deeper Dive Group 4 for complete details:

DEEPER DIVE Group 1 – Health Care Workers and Long-Term Care Staff and Residents
DEEPER DIVE Group 4 – Adults at Higher Risk for Exposure and Increased Risk of Severe Illness (Essential Workers Not Yet Vaccinated and Other Group Living Settings)

In addition to the NCDSA Call to Action with a consortium of Down syndrome organizations across North Carolina, NCDSA worked with state level agencies directly with staff at NCDHHS. NCDSA would like to acknowledge the advocacy efforts of:

Response from the State is consistent

People with Down syndrome are being overlooked

Advocacy efforts to have adults with Down syndrome included in the equitable distribution of available COVID-19 vaccines have been denied. The response from the North Carolina Department of Health and Human Services (NC HHS) and the Office of the Governor has been consistent. The State maintains adults with Down syndrome are included in NC HHS vaccine distribution in Groups 1, 2, and 3. This may be true in theory.

Decision makers need to be educated on the reality of the situation.

North Carolina Down Syndrome Alliance (NCDSA) has organized a consortium of North Carolina Down syndrome support organizations from across the state. The consortium is working together on behalf of people with Down syndrome to gain access to currently available COVID-19 vaccines.

Now it’s your turn.

We are stronger together as we work to demand individuals with Down syndrome be prioritized in the State’s Vaccine Plan. It’s as easy as sending an email. Everything you need is provided – letter templates, contact information, social media feeds.

Call to Action for Vaccine Prioritization!
Contact Dr. Mandy Cohen & Governor Roy Cooper
Contact your Members of the North Carolina General Assembly

Contact:

Mandy K. Cohen, MD, MPH Secretary, North Carolina Department of Health and Human Services
mandy.cohen@dhhs.nc.gov

North Carolina Department of Health and Human Services
2001 Mail Service Center
Raleigh, NC 27699

Twitter: @SecMandyCohen
Facebook: https://www.facebook.com/ncdhhs

Governor Roy Cooper
Email: NC Gov. Cooper: Contact Governor Cooper

North Carolina Office of the Governor
20301 Mail Service Center
Raleigh, NC 27699-0301

Twitter: @NC_Governor
Facebook: https://www.facebook.com/NCgovernor/

Your North Carolina State Senator and State Representative
Find your legislators

Letter and Email Template:

Dr. Cohen and Governor Cooper

Your State Senator and State Representative

Additional Information:

NCDSA Recommendations for Deeper Drive Group 1

COVID-19 Vaccines and Down Syndrome Talking Points

North Carolina Down Syndrome Organizations band together to demand individuals with Down syndrome be prioritized in the State’s Vaccine Plan.

Call to Action for Vaccine Prioritization! Contact Dr. Mandy Cohen & Governor Roy Cooper Now!

Letter or Email Templates:

a person with Down syndrome

  family member/guardian/caregiver

COMMUNITY PARTNER/ALLY

Who to Contact:

Contact Information:

Mandy K. Cohen, MD, MPH Secretary, North Carolina Department of Health and Human Services
mandy.cohen@dhhs.nc.gov

North Carolina Department of Health and Human Services
2001 Mail Service Center
Raleigh, NC 27699

Twitter: @SecMandyCohen
Facebook: https://www.facebook.com/ncdhhs

Governor Roy Cooper
Email: NC Gov. Cooper: Contact Governor Cooper

North Carolina Office of the Governor
20301 Mail Service Center
Raleigh, NC 27699-0301

Phone: 919-814-2000

Twitter: @NC_Governor

Facebook: https://www.facebook.com/NCgovernor/

Why?

The Centers for Disease Control (CDC) included individuals with Down syndrome on the list of conditions that are at increased risk for severe illness from the virus that causes COVID-19. Severe illness from COVID-19 is defined as hospitalization, admission to the ICU, intubation or mechanical ventilation, or death. Following the addition to this list, adults with Down syndrome were placed in Group 2 for vaccine priority. However, the NC Department of Health and Human Services (NC DHHS) restructured the list for vaccine priority when it expanded Group 2 to include adults age 65 and older. The new priority list for vaccines has move adults with Down syndrome to Group 4.

Down syndrome support organizations across North Carolina are working together to bring attention to this matter and have adults with Down syndrome take their original spot on the priority list for vaccines. Please use the following samples to contact Dr. Mandy Cohen, Secretary of NC DHHS and Governor Roy Cooper about your concerns and request an equitable distribution of the available COVID-19 vaccines.

In addition to sending an email or letter, please post comment on the NC DHHS’s and Governor’s social media accounts. Please use the hashtag #IWantMyShot

Who?