Today, I am happy to share with you an exciting and important milestone for CP NOW and CP Daily Living, and for the entire CP community. Our programs and those of CPRN are merging and all combining under one name: Cerebral Palsy Research Network.

But first, I want to talk with you about our journey together so far. For the last 10 years, we have welcomed you into our home and shared with you some of the most vulnerable parts of our heart. Our family has cherished learning from you and having an extraordinary audience caring enough to follow Lillian Maya’s growth. You have known her since she was just four years old, and now she is almost 14! How is this possible?

This space was created because when Lilly was born, we couldn’t find many reliable resources to help us understand how to best care for her. Cerebral palsy research was limited and there wasn’t much of an organized US community offering support and information. So, to help our family, and out of frustration, I began digging up information and interviewing doctors to understand the state of the community and what resources existed. To prevent others from starting from scratch like we did, I began CP Daily Living, our blog and resource website where I shared my reactions and feelings to what we faced in raising our daughter. I was candid about what we experienced whether it was navigating treatment decisions, coping with epilepsy, understanding her visual processing disorder or helping her have access to as much of life as possible. My primary goal was to share the emotions and struggles (as well as successes) we faced while also detailing whatever information and practical solutions we found along the way.

As we developed and published a website, a community—your community—grew way beyond the blog. We wanted to reach further and develop the diagnosis resource we longed for as parents but never found. That led to the formation of our nonprofit CP NOW, and the creation of the award-winning CP Tool Kit.

CP Tool Kit

We wanted to create additional resources like our wellbeing guide and information that supported the entire community throughout the lifespan—which we will do. Along the way we have been directing attention and resources to the needs of individuals with CP and their families and caregivers. Working with other advocacy and research organizations, we made it known that community voices were essential to make research and education the most meaningful to individuals with CP and their family members. And in the last couple of years we funded our first two research studies!

Together we have come a long way. Over those 10 years, there has been an international effort to establish guidelines for early diagnosis and intervention, understand and publish the state of research (what do we know and what don’t we know), and to view the individual with CP more holistically. Professional societies have stretched themselves to include families and adults with CP in their research, presentations and learning. We pushed for this! We are grateful that we were heard and listened to. Clinicians and researchers are thinking about CP differently and more holistically. I am so impressed with the shifts I have seen at organizations such as the National Institute of Health and the American Academy for Cerebral Palsy and Developmental medicine (AACPDM). In 2017, AACPDM created a Community Council in order to better understand what our community values. Thank goodness it’s become clear to many more people that CP goes beyond being a childhood movement disorder/s and includes a large adult community that needs support and care as well (yes, I agree we still need to work on this)!! And there is much better awareness that because CP is the result of a brain injury/disturbance in early brain development, it includes a host of possible associated conditions that require screening and attention.

For the past several years, our closest collaborating organization has been CPRN, the Cerebral Palsy Research Network. CPRN has created a learning health network dedicated to making a difference in outcomes (ie how people respond to treatments, therapies etc.) for people with CP. The network facilitates cooperative research and healthcare improvement among 28 institutions (hospitals, clinics, and affiliated universities) and the communities they serve throughout North America. Clinician researchers work side by side with individuals with CP and their family members to prioritize CP community health concerns and improve care. Some of you may recall the Research CP program we hosted together, and, as the founder of CP NOW, I have simultaneously acted as the CP Research Network’s community engagement coordinator. Paul Gross is the Chairman of CPRN and, like me, is also a parent of a child with CP.

Our two organizations share similar values such as transparency, empowering individuals with CP and their family members, high-quality research, and including our community members in the research process. We will continue to focus on these values. Our newly combined mission maintains the same elements upon which CP NOW was founded but expands our commitment to research and wellness programming. Our mission is to optimize the lifelong health and wellness of people with cerebral palsy and their families through high-quality research, education, and community programming. The CP Research Network, headed by Paul, will become the flagship organization with a focus on the following four areas:

1. Community 2. Research  3. Education  4. Health and Wellbeing.

Both CP Now and CP Daily Living will be incorporated within the new organization.

I am so excited about this change because it will increase the impact of both our organizations and all our programs. Our combined networks, the CP NOW community and CPRN’s huge network of institutions and researchers, will increase information sharing and encourage ongoing collaboration between individuals with CP, their family members, and the clinicians and researchers dedicated to transforming CP healthcare. With one large rather than two smaller organizations we will strengthen our position to meet our mission.

I will have an integral role within our expanded organization as both a board member and as a coordinator of educational and wellbeing activities, and there is plenty of room for you, too. The trust and warmth we have shared on this website and our social media pages will continue. This is the next step toward the goals we have always spoken about and advocated for on our page. I cannot thank you all enough for being my audience, for encouraging me and giving me strength when I didn’t realize I needed it.

Please join us as the CP community moves to the next level. Stay tuned for further updates and information about changes to our website (don’t worry you will still be able to find our blog and resources), social media pages and more.

Sincerely,

Michele