By Sara Froelich of the Chronic Care Collaborative and Marilyn Spinner of Adira Foundation

Each March, the Chronic Care Collaborative of Colorado recognizes Chronic Disease Awareness Day, where people living with chronic conditions are united in their message of how critical improved affordability and access in health care are for our community. It’s an inspiring reminder that while our individual conditions and how they impact us individually are very different, our common goals are united. It’s also powerful for those who aren’t living with a chronic disease to recognize that at least one in four in Colorado are currently living with a chronic condition. And across the nation that number rises to nearly half of all adults, according to the National Health Council.

Listening and exchange

The virtual Chronic Disease Awareness Day attracted 130 attendees.

At Adira Foundation, we recognize the essential purpose of organizations like the collaborative: a format for a collective voice, a place for listening and exchange, and an opportunity to join forces to respond to neurodegenerative diseases like ALS (amyotrophic lateral sclerosis), Alzheimer’s disease, multiple sclerosis, Parkinson’s disease and Huntington’s disease. While the Chronic Care Collaborative represents many other chronic illnesses, we see much opportunity for addressing common goals in the space where we overlap.

On a recent visit to Denver, Adira CEO and Founder Greg Smiley met with a group of Chronic Care Collaborative members—leaders of associations that represent each of Adira’s five neurodegenerative disease states—to hear more about that space. Not surprisingly, the exchange that resonated with all was a desire to see where the trajectory can change for people living with neurodegenerative diseases and those who care for them. We learned that while the diseases are each different, the diagnosed person encounters some consistent experiences. Greater services are needed in:

  • Home care.
  • Long-term care planning and advising.
  • Accessibility in transportation.
  • Navigating health systems.
  • Support for livability.

Adira Foundation and the Chronic Care Collaborative share the belief that a person is never defined by their diagnosis. However, people with chronic conditions, especially those with neurodegenerative diseases, do have unique needs due to their condition that can change from day-to-day or month-to-month. Adira and the Chronic Care Collaborative are considering opportunities we see for working together to help tackle some of the big things for our shared community, such as:

  • Improved collaboration in health care systems.
  • Support and resources for caregivers.
  • Patient-friendly health care policies.
  • Increased research that benefits all with neurodegenerative diseases.

Opportunity in a shared voice

It is no small effort to organize together, or to make known the great impact joint efforts like these could have. Eight million individuals in this country live with one of these five diseases. Diagnoses are expected to increase 38 percent to 11 million by 2030. And as a result of the large Baby Boomer population aging, the 85 years and over group is expected to grow from 5.8 million to 18 million by 2050. Given that neurodegenerative diseases are more common in older adults, the effort to have better processes in place is not only necessary, but timely. Adira Foundation and Chronic Care Collaborative of Colorado both see great opportunity in a shared voice for people with chronic illnesses and attention to listening to their needs to find ways to benefit individuals and families through likeminded approaches and a call to action.

Partnerships are a valuable and viable part of the exchange in advocating for and supporting people with chronic illness. With our current environment, responding to COVID-19, we look to those who support and reach out to people with conditions that are in a vulnerable place and need additional resources and support. Both Adira Foundation and the Chronic Care Collaborative are engaging in continued conversations and exchanging ideas and responses to our shared communities:

This year, Chronic Disease Awareness Day (#ChronicDiseaseCO) was a virtual event for the first time due to COVID-19. A sense of community is always important, but the ability to come together in whatever ways we can feels more important than ever before while all people, especially those living with chronic conditions, are practicing strict social distancing to protect themselves and others. Please help us continue to stay connected with each other via social media and more virtual opportunities to continue to unite, listen, support each other, and spread hope.

Though we understand people have so much else on their minds right now, if you find yourself needing a distraction or wanting to feel connected to others, we encourage you to find our hashtag campaign #Heart4ND. We were hoping to raise awareness for the commonness of neurodegenerative disease connection and you are still most welcome to share your personal connection to neurodegenerative diseases on social media using #Heart4ND.

To be a part of the conversation and to participate with Adira Foundation in other ways, visit our Join page and be a part #Heart4ND through the month of March. While you’re at it, follow us on Facebook, Twitter and Instagram. To learn more about the Chronic Care Collaborative’s efforts in Colorado, please visit chroniccarecollaborative.org.

Sara Froelich is the executive director for the CCC.

Marilyn Spinner is the chief development and external affairs officer for Adira Foundation.