Finding Common Ground To Help People Living With Neurodegenerative Diseases
Each Spring, the Chronic Care Collaborative celebrates Chronic Disease Awareness Day at the Colorado State Capitol when 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 unify us. 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.
At Adira Foundation, we recognize the essential purpose of the CCC; a format for a voice, a place for listening and exchange, and an opportunity to join forces to respond to neurodegenerative diseases like MS, ALS, Alzheimer’s, Parkinson’s Disease, and Huntington’s Disease. Of course, the Chronic Care Collaborative represents other chronic illnesses, yet where Adira and the group unit is among these five disease states.
On a recent visit to Denver, CEO and Founder of Adira Foundation, Greg Smiley met with Chronic Care Collaborative members who are association leaders of the five neurodegenerative disease states listed above. Not surprisingly, we heard an exchange that resonates with all; a desire to see where the trajectory can change for people living with neurodegenerative diseases and for those who care for them. What we learned is the diseases are different, yet there are consistent experiences for the diagnosed person; greater services are needed in home care, long term care planning and advisement, accessibility in transportation, navigating health systems and services supporting livability.
Adira Foundation and Chronic Care Collaborative recognize that a person is never defined by their diagnosis. However people with chronic conditions, especially those with neurodegenerative diseases have unique needs due to their condition, which often change from day-to-day or month-to-month. Adira and the CCC look forward to working together to help tackle some of the big things for our community, like improved collaboration in health care systems, support and resources for caregivers, patient-friendly health care policies, and increased research that benefits all who are living with neurodegenerative diseases.
It is no small effort to organize, and to make known that there are 8 million individuals who are diagnosed in this country with one of these five diseases. By 2030, we expect the number of diagnoses will increase 38% to 11 million. As our baby boomer population advances, we will see an additional increase of those 85 years and over, a group expected to grow from 5.8 million to 18 million by 2050. Given that neurodegenerative diseases are more common in older adults, the desire to have better processes in place is not only necessary, but timely. The Adira Foundation and the CCC see 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 like minded approaches and a call to action.
In 2020, 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 now more than ever 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 via social media and more virtual opportunities to continue to unite, listen, support each other, and spread hope.
We encourage you to share your personal connection to neurodegenerative diseases on social media and use the hashtag #Heart4ND to help raise awareness and help others.
To be a part of the conversation and to participate with Adira Foundation in other ways visit http://www.adirafoundation.org, be a part of the #Heart4ND online movement, and follow us on Facebook and Instagram. To learn more about the Chronic Care Collaborative’s efforts in Colorado, please visit https://www.chroniccarecollaborative.org/.
By: Marilyn Spinner, Chief Development and External Affairs Officer for Adira Foundation and Sara Froelich, Executive Director of the CCC