Meaningful Change Series—Spring 2023
From Surviving to Thriving
Part 1: TCSF's Connor James Smith Patient Assistance Grant Reveal
Part 2: PRAX-562 Epilepsy Program Updates with Praxis Precision Medicines
Part 3: Restoration Roadmap: Forget Recovering the Old You. Let's Take a Look at Restoration.
Part 4: Perspectives on Achieving Meaningful Change: A Roundtable Discussion with Clinicians, Researchers, Caregivers, and Industry
Part 5: Caregiver Self Preservation: Physical Therapist Perspective
Part 6: How Do You Do It?: Traveling Tips and Tricks from SCN8A Caregivers
Part 2: PRAX-562 Epilepsy Program Updates with Praxis Precision Medicines
Part 3: Restoration Roadmap: Forget Recovering the Old You. Let's Take a Look at Restoration.
Part 4: Perspectives on Achieving Meaningful Change: A Roundtable Discussion with Clinicians, Researchers, Caregivers, and Industry
Part 5: Caregiver Self Preservation: Physical Therapist Perspective
Part 6: How Do You Do It?: Traveling Tips and Tricks from SCN8A Caregivers
Thank you to our generous sponsors!
Part 1—TCSF's Connor James Smith Patient Assistance Grant Reveal
With Krista Smith, TCSF Volunteer and Connor's mom
We kicked off The Cute Syndrome Foundation’s 3rd Annual Meaningful Change Series with the reveal of our Connor James Smith Patient Assistance Grant. Connor's mom, Krista, discussed the background and inspiration for the grant, and TCSF Executive Director, Kacie, walked through the details of applying for the grant.
We kicked off The Cute Syndrome Foundation’s 3rd Annual Meaningful Change Series with the reveal of our Connor James Smith Patient Assistance Grant. Connor's mom, Krista, discussed the background and inspiration for the grant, and TCSF Executive Director, Kacie, walked through the details of applying for the grant.
Part 2—PRAX-562 Epilepsy Program Updates
With Brian Pfister, VP of Global Medical Affairs and Ross Martin, Patient Advocacy Lead, Epilepsy
Live conversation with Praxis Precision medicines to discuss PRAX-562 program updates. We also enjoyed a fireside chat with Kacie Craig, TCSF Executive Director; Ross Martin, Patient Advocacy Lead, Epilepsy; and Brian Pfister, VP of Global Medical Affairs, as we discussed common clinical trial questions.
Live conversation with Praxis Precision medicines to discuss PRAX-562 program updates. We also enjoyed a fireside chat with Kacie Craig, TCSF Executive Director; Ross Martin, Patient Advocacy Lead, Epilepsy; and Brian Pfister, VP of Global Medical Affairs, as we discussed common clinical trial questions.
Part 3—Restoration Roadmap: Forget Recovering the Old You, Let’s Take a Look at Restoration
With Kara Ryska, Podcast Host and Life Coach
Participants walked away from this interactive workshop with validation that no matter which stage of this journey they find themselves in, there is hope of a future that includes a restored sense of who they are and what is possible for their life. As a roadmap, we used the five stages of “The Evolution of a Special Needs Parent” to identify which stage best describes participant's current experience. With this clarity they developed actionable and tangible steps that empower them to move towards their own personal restoration.
Participants walked away from this interactive workshop with validation that no matter which stage of this journey they find themselves in, there is hope of a future that includes a restored sense of who they are and what is possible for their life. As a roadmap, we used the five stages of “The Evolution of a Special Needs Parent” to identify which stage best describes participant's current experience. With this clarity they developed actionable and tangible steps that empower them to move towards their own personal restoration.
Part 4—Perspectives on Achieving Meaningful Change: A Roundtable Discussion with Clinicians, Researchers, Caregivers, and Industry
With Dr. Inna Hughes, University of Rochester; Carolyn McMicken, Neurocrine Biosciences; Dr. John Schreiber, Children's National; Marianne Sutcliffe, Caregiver; Dr. Svetlana Shore, Neurocrine Biosciences
Kacie Craig, TCSF Executive Director, facilitated a panel discussion with Neurocrine Biosciences Clinical Development and Regulatory Affairs, SCN8A caregivers, and clinical trial clinicians as they provided their own perspectives on what meaningful change and “surviving to thriving” means to them. Neurocrine also shared the latest status of the Neurocrine SCN8A clinical trial (Kayak Study–update begins at 5:30 mark) and what these potential treatments might mean for the SCN8A patient community.
Kacie Craig, TCSF Executive Director, facilitated a panel discussion with Neurocrine Biosciences Clinical Development and Regulatory Affairs, SCN8A caregivers, and clinical trial clinicians as they provided their own perspectives on what meaningful change and “surviving to thriving” means to them. Neurocrine also shared the latest status of the Neurocrine SCN8A clinical trial (Kayak Study–update begins at 5:30 mark) and what these potential treatments might mean for the SCN8A patient community.
Part 5—Caregiver Self Preservation: Physical Therapist Perspective
With Sarah Jones, MPT and Michelle Youngquist, PT, DPT, Henry's mom
Kacie Craig, TCSF Executive Director, facilitated a discussion with physical therapists Sarah Jones and Michelle Youngquist about ways to minimize back or joint pain that is most likely caused by repetitive movements or heavy lifting due to your lifestyle as an SCN8A caregiver. The discussion also included easy-to-follow workout and stretching routines to complete at home to help build muscle, increase flexibility, and prevent injury.
Kacie Craig, TCSF Executive Director, facilitated a discussion with physical therapists Sarah Jones and Michelle Youngquist about ways to minimize back or joint pain that is most likely caused by repetitive movements or heavy lifting due to your lifestyle as an SCN8A caregiver. The discussion also included easy-to-follow workout and stretching routines to complete at home to help build muscle, increase flexibility, and prevent injury.
Part 6—How Do You Do It?: Traveling Tips and Tricks from SCN8A Caregivers
With with SCN8A caregivers Kacie Craig, Colleen Johnston, Gaelle Muller-Greven, and Madison Whigham; Marie Trottier, TSA Cares
We wrapped up the Meaningful Change series by chatting with five moms that have traveled with their SCN8A children. They covered the tricks and tips of taking long trips, short trips, and even day trips by vehicle, plane, and train! We were also thrilled to welcome a special guest speaker, Marie Trottier, with TSA Cares to talk about their programs and how to best utilize what they have to offer.
We wrapped up the Meaningful Change series by chatting with five moms that have traveled with their SCN8A children. They covered the tricks and tips of taking long trips, short trips, and even day trips by vehicle, plane, and train! We were also thrilled to welcome a special guest speaker, Marie Trottier, with TSA Cares to talk about their programs and how to best utilize what they have to offer.