Date/Time
Date(s) - 16 Mar 2026
9:30 AM - 3:30 PM
Location
Arizona Capitol
AZBio, the Skeletal Conditions Advocacy Coalition, the the Little Legs Big Heart Foundation, and the Noonan Syndrome Foundation invite you to join a day of advocacy and action on behalf of all Arizonans impacted by rare skeletal conditions.
Join us at the Arizona State Capitol to meet your state legislators, share your patient story, and help advance key policy priorities. We’ll highlight the critical need for early diagnosis and intervention, dignity in care, and support through multiple life stages.
Rare skeletal conditions have been left out of the rare disease narrative in recent years.
The status quo to “wait and see” what happens should not be the norm for the children born each year with rare skeletal conditions.
We hope to see you there!
Arizona Capitol Museum Building
To join us in the Old Senate Chamber, please take the elevator to the third floor.
Date: Monday, March 16, 2026
Time: 9:30 am – 3:30 pm
Location:
Old Senate Chamber
Arizona Capitol Museum
1700 W Washington St. Phoenix. AZ. 85007
Light Refreshments and Lunch will be provided
REGISTER
Please register early. We are limited to 50 guests.
Attendees are asked to provide a home address so we can let your legislators know you are coming!
Kristen DeAndrade
Special Guest Speakers:
Voice of the Patient: Kristen DeAndrade, Founder and President, The Little Legs Big Heart Foundation,
A 501(c)(3) organization, The Little Legs Big Heart Foundation is dedicated to empower and support individuals living with skeletal dysplasia and their families.
Kristen DeAndrade is a relentless advocate breaking down stereotypes and barriers surrounding skeletal dysplasia and disability. In 2024, she founded The Little Legs Big Heart Foundation, a nonprofit focused on advocacy, medical support, and community empowerment for the skeletal dysplasia community. As the author of Little Legs, Big Heart, Kristen shares her journey of resilience, vulnerability, and triumph, encouraging others to embrace their strength unapologetically. Based in West Palm Beach, Florida, she amplifies her voice through her foundation, writing and motivational speaking to drive meaningful change and foster inclusivity.
Building Relationships: Joan Koerber-Walker, President & CEO, Arizona Bioindustry Association (AZBio).
Patient Advocates and Elected Leaders have a shared mission, to make life better for people in their communities. Sharing our stories, building relationships, and finding common ground is the way change happens. As President & CEO of AZBio, Joan works to build relationships across Arizona and across the country as she advocates for patients and the health innovations they are waiting for. She’ll share her story and tips on how YOU can build relationships that help you become a more effective advocate in your community.
Health Innovation: Michael Ash, Senior Vice President, Skeletal Conditions, BioMarin
Michael Ash is an accomplished biotechnology executive with over three decades of experience in rare disease innovation and patient-centered commercial strategy. As Senior Vice President and Head of the Skeletal Conditions Business Unit at BioMarin, Michael leads global efforts to advance treatments for rare, progressive skeletal conditions, many of which disproportionately affect children.
Michael Ash’s leadership is defined by a tireless pursuit of better outcomes for patients and communities affected by rare diseases. He is committed and focused on expanding access to life-changing treatments, fostering collaboration among industry stakeholders, and championing innovation both locally and globally.
Michael Ash’s leadership is defined by a tireless pursuit of better outcomes for patients and communities affected by rare diseases. He is committed and focused on expanding access to life-changing treatments, fostering collaboration among industry stakeholders, and championing innovation both locally and globally.
Educational and Professional Background
An Arizona native who grew up in Tucson, Michael earned his bachelor’s degree in business administration from the University of Arizona. His educational foundation provided a strong platform for his career in healthcare and biotechnology. Michael’s professional career spans leadership roles at some of the industry’s leading biopharma organizations, including Genentech, Freenome, and BioMarin. Michael has spearheaded early diagnosis initiatives and cultivated partnerships with clinicians, researchers, and patient advocacy groups not only in Arizona but across more than 50 countries worldwide.
Board and Community Engagement
In addition to his executive responsibilities, Michael serves on the Board of Directors of BioMarin International, expanding his understanding of the global challenges faced by the rare disease community. His commitment to service is further demonstrated through prior roles, including serving on the Board of Directors for the Cancer Support Community AZ and active involvement in the University of Arizona Alumni Association.
Commitment to Arizona and Rare Disease Advocacy
Having called Arizona home for over thirty-five years, Michael is passionate about leveraging his expertise to serve his local community. He possesses a deep understanding of the unique challenges within the rare disease ecosystem, from delayed diagnoses to limited access to specialists. Michael is dedicated to improving the lives of individuals living with rare diseases in Arizona and is committed to ensuring that the state remains at the forefront of healthcare innovation.
Thank you to our lunch sponsor:
