BEGIN:VCALENDAR VERSION:2.0 PRODID:-//wp-events-plugin.com//7.2.3.1//EN TZID:America/Phoenix X-WR-TIMEZONE:America/Phoenix BEGIN:VEVENT UID:2013@azbio.org DTSTART;TZID=America/Phoenix:20260316T093000 DTEND;TZID=America/Phoenix:20260316T153000 DTSTAMP:20260310T132445Z URL:https://www.azbio.org/events/rare-skeletal-conditions-advocacy-day-at- the-arizona-capitol SUMMARY:Rare Skeletal Conditions Advocacy Day at the Arizona Capitol - Ariz ona Capitol - 16 Mar 26 09:30 DESCRIPTION:\n\n\n\nAZBio\, the Skeletal Conditions Advocacy Coalition\, th e the Little Legs Big Heart Foundation\, and the Noonan Syndrome Foundatio n invite you to join a day of advocacy and action on behalf of all Arizona ns impacted by rare skeletal conditions. \;\nJoin us at the Arizona St ate Capitol to meet your state legislators\, share your patient story\, an d help advance key policy priorities. We’ll highlight the critical need for early diagnosis and intervention\, dignity in care\, and support throu gh multiple life stages.\n \;\nRare skeletal conditions have been left out of the rare disease narrative in recent years. \nThe status quo to “wait and see” what happens should not be the norm for the children bo rn each year with rare skeletal conditions.\n \;\nWe hope to see you t here!\n\n\n[caption id="attachment_47933" align="alignright" width="300"] Arizona Capitol Museum BuildingTo join us in the Old Senate Chamber\, plea se take the elevator to the third floor.[/caption]\n\n\nDate: \; Monda y\, March 16\, 2026\nTime: 9:30 am - 3:30 pm\n \;\nLocation:\nOld Sena te Chamber\nArizona Capitol Museum\n1700 W Washington St. Phoenix. AZ. 850 07\n \;\nCapitol Buildings and Parking Map \;\n \;\nLight Refr eshments and Lunch will be provided\n \;\nREGISTER\nPlease register ea rly. \; We are limited to 50 guests.\nAttendees are asked to provide a home address so we can let your legislators know you are coming!\n\n\n[ca ption id="attachment_48690" align="alignright" width="300"] Kristen DeAndr ade[/caption]\n\n\nSpecial Guest Speakers:\n\n\nVoice of the Patient: Kris ten DeAndrade\, Founder and President\, The Little Legs Big Heart Foundati on\,\n\n\nA 501(c)(3) organization\, \; The Little Legs Big Heart Foun dation is dedicated to empower and support individuals living with skeleta l dysplasia and their families.\n \;\nKristen DeAndrade is a relentles s advocate breaking down stereotypes and barriers surrounding skeletal dys plasia and disability. In 2024\, she founded The Little Legs Big Heart Fou ndation\, a nonprofit focused on advocacy\, medical support\, and communit y empowerment for the skeletal dysplasia community. As the author of Littl e Legs\, Big Heart\, Kristen shares her journey of resilience\, vulnerabil ity\, and triumph\, encouraging others to embrace their strength unapologe tically. Based in West Palm Beach\, Florida\, she amplifies her voice thro ugh her foundation\, writing and motivational speaking to drive meaningful change and foster inclusivity. \;\n \;\n \;\n \;\nBuildin g Relationships: Joan Koerber-Walker\, President &\; CEO\, Arizona Bioi ndustry Association (AZBio).\n \;\nPatient Advocates and Elected Leade rs have a shared mission\, to make life better for people in their communi ties. \; Sharing our stories\, building relationships\, and finding co mmon 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 fo r. She'll share her story and tips on how YOU can build relationships that help you become a more effective advocate in your community. \;\n&nbs p\;\n \;\n\nHealth Innovation: Michael Ash\, Senior Vice President\, S keletal Conditions\, BioMarin\n \;\n\n\n\nMichael \;Ash \;is a n accomplished biotechnology executive with over three decades of experien ce in rare disease innovation and patient-centered commercial strategy. As Senior Vice President and Head of the Skeletal Conditions Business Unit a t BioMarin\, \;Michael \;leads global efforts to advance treatment s for rare\, progressive skeletal conditions\, many of which disproportion ately affect children.\n \;\nHaving called Arizona home for over thirt y-five years\, Michael is passionate about leveraging his expertise to ser ve his local community. He possesses a deep understanding of the unique ch allenges within the rare disease ecosystem\, from delayed diagnoses to lim ited access to specialists. Michael is dedicated to improving the lives of individuals living with rare diseases in Arizona and is committed to ensu ring that the state remains at the forefront of healthcare innovation.\n\n  \;\nThank you to our lunch sponsor:\n\n \;\n \;\n \;\n&nb sp\;\n \;\n \; CATEGORIES:AZ - Central,Education LOCATION:Arizona Capitol\, 1700 W. Washington Street\, Phoenix\, AZ\, 85007 \, United States X-APPLE-STRUCTURED-LOCATION;VALUE=URI;X-ADDRESS=1700 W. Washington Street\, Phoenix\, AZ\, 85007\, United States;X-APPLE-RADIUS=100;X-TITLE=Arizona C apitol:geo:0,0 END:VEVENT BEGIN:VTIMEZONE TZID:America/Phoenix X-LIC-LOCATION:America/Phoenix BEGIN:STANDARD DTSTART:20250316T093000 TZOFFSETFROM:-0700 TZOFFSETTO:-0700 TZNAME:MST END:STANDARD END:VTIMEZONE END:VCALENDAR