Fragile X Foundation Newsletter January/February 2023
2023 Strategic Planning Session
To regain its momentum after the COVID epidemic, the North Carolina Fragile X Foundation (NCFXF)’s board of directors met on Saturday, January 28 for a strategic planning session led by two pro bono facilitators from the Executive Service Corps, Art Zucker and Dave Miller.
The day-long planning session focused on board member roles and responsibilities, inventorying board member skills and developing an understanding of the communications and marketing framework of the organization.
The afternoon session focused on committee work and achievable goal setting for 2023, scheduling events and the Foundation's program of work in board recruitment, education and advocacy and communications strategies for the future.
A special thanks to Art Zucker, Dave Miller and the Executive Service Corps for volunteering to facilitate the planning session.
Board meetings are open to anyone interested and may be online or in person. The board had previously set the dates for the 2023 meetings:
- January 28 - Board member training and retreat
- March 11 – Board meeting
- June 10 - Annual Meeting
- September 9 - Board meeting
- December 9 - Board meeting
NCFXF Welcomes Three New Board Members
President Steve Strom and the board approved three new members during its December board meeting and welcomed them to the planning session. New board members include:
Allison Taylor - Physician's Assistant at Duke in psychiatry, child and adult mental health and pain meds. Allison has been a long-time Civitan member and leader in the local, state and international chapters. She and her fellow Civitan members have supported the North Carolina Fragile X Foundation over the years with volunteers and funding for projects. She is excited to now be part of the Foundation as a new board member.
Juan Pablo Molliendo - Parent of young teenage daughter diagnosed with FXS at the age of 5, Spanish speaking, connected with the national FX community and expertise, serves on his HOA committee, works for The Nielsen Company, a global leader in audience measurement. Willing to participate in activities of the board. He has a strong passion for community involvement with individuals with FXS, and Fragile X awareness.
Diane Upshaw - Budget Analyst for the State of NC in the Office of State Budget and Management; Been an active member of the Cary Jaycees for over 20 years and is currently a NC Jaycee Senator; Treasurer for NCSU Public Administration Alumni Society.
Anyone interested in serving on the board or volunteering to work on the Education and Advocacy, Marketing and Fundraising, Finance or Governance committees, please contact Foundation President Steve Strom at steve@ncfragilex.org.
Advocate For Medicaid Expansion
Medicaid expansion in North Carolina is expected to be a hot topic in the ongoing legislative session – which opened January 11 and runs through July 28, 2023.
The disability community as well as diverse groups representing people with lower incomes will be rallying around this idea. It will provide medical insurance to an estimated 346,000 people with incomes up to 138 percent of the federal poverty level and bring $8 billion dollars into the state to improve access and care for vulnerable people – including those with disabilities such mental illness, cerebral palsy, autism and Fragile X.
Interested people should look to The Arc of North Carolina, North Carolina Council on Developmental Disabilities (NCCDD) and the North Carolina Fragile X Foundation for more information and opportunities to advocate for Medicaid expansion in our state.
For more information, visit NCFXF website at ncfragilex.org or contact Steve Strom via email at steve@ncfragilex.org.
Upcoming 2023 Events
March 11, 2023
Board Meeting
June 10, 2023
Board Meeting
July 22, 2023 (Tentative)
NC Fragile X Awareness Day
Governor’s Proclamation
July 23, 2023 (Tentative)
Bowl-a-thon
Celebrating NC Fragile X Awareness Day
September 9, 2023
Board Meeting
Fall 2023
Fragile X Picnic
1:00 to 4:00 PM
Date and Location TBD
December 9, 2023
Board Meeting