Building a Future Together 2026
A HUNTER SYNDROME COMMUNITY CONFERENCE
BUILDING A FUTURE TOGETHER
Event Details
About the Conference
Project Alive is thrilled to host the Building a Future Together conference from March 13-15, 2026. The conference will bring together families impacted by Hunter syndrome, clinicians and other providers, industry partners, and advocates. Families will hear from industry, learn about topics that frequently impact the community, and network with their peers. Families of other MPS types are welcome to join us using the same MPS family ticket options.
The conference will be held at the Westin South Coast Plaza. We encourage families to arrive by March 12, 2026. On Friday, March 13th, we will embark on a charter bus to Knott's Berry Farm Amusement Park. This will be free for all Hunter syndrome families. Saturday, our conference will be held at the Westin South Coast Plaza. Kids will be welcomed at our Kids Camp while adults can enjoy a day filled with educational and inspiring sessions. Sunday, we will all head back on the charter bus to visit the Beyond Blindness campus for family bonding activities, breakout sessions, and a fun day for the kids on adaptive playgrounds.
We are excited to announce that our Young Leaders Advocacy Program will be held in-person as concurrent sessions on Saturday! The Young Leaders Advocacy Program is a youth-led initiative empowering siblings and peers of those with Hunter syndrome to become confident advocates. Participants learn how to share their stories, engage with lawmakers, and raise awareness for rare disease issues, building leadership and communication skills that last a lifetime. Participants will receive a certificate of completion at the end of the day and will have ongoing access to support from our team. There is no additional fee to participate.
Room Block
There is a room block at the Westin South Coast Plaza for all guests to utilize at a discounted rate. The room block is available for the nights of March 10th through March 19th for those wishing to extend their visit and enjoy all that Southern California has to offer. You must book by February 27th to utilize the discounted rate. There are King and Double Queen rooms along with ADA rooms available. The hotel also offers adjoined rooms.
Scholarships
Scholarships are available for families impacted by Hunter syndrome. Scholarships will include the full cost of airfare (or mileage/rental car reimbursement), hotel stay for 4 nights, and conference registration for up to 4 members of the household. Applications will be reviewed by a panel to determine awardees. Priority will be given to families based on factors including having a child that has been diagnosed in the last two years, previous ability to attend any MPS conferences, and financial need. The number of families awarded will be dependent on available funding and costs per family for their travel. Scholarship applications will close on December 20, 2025. Awardees will be notified within two weeks. Awardees will be allotted one week to confirm their acceptance before their award is released to families on the waitlist.
Kids Camp
Child care is available at no cost to families impacted by MPS. Affected children and unaffected siblings are welcome to attend. Infants to teens welcome. There is limited availability for child care so please ensure you register early and complete all necessary forms. Registration for child care will close on March 1, 2026.
Kids Camp will be hosted by our trusted partner, Beyond Blindness. Beyond Blindness is a nonprofit organization in Southern California with the mission to empower children with visual impairments and other disabilities to achieve their fullest potential. They provide early intervention (both in home and in a day class), preschool classrooms, robust therapy services, and more. Beyond Blindness has 60 years of experience caring for children of all abilities and have had children with MPS in their school! To learn more about their program, please visit www.beyondblindness.org.
Sign Up for Kids Camp **Coming Soon**
SibShop
This year, our conference will feature a SibShop opportunity! This session will be geared towards unaffected siblings within the ages of 7-16. This session is free to all siblings that have a sibling with MPS, including bereaved siblings. SibShops are a fun way for siblings to connect, share their experiences, and learn helpful coping skills through a playful approach.
You can register your interest in SibShops when you place your conference order. You will receive an additional email for any specific information needed in order to complete the registration for SibShops.
