LINKS: One Busy and Awareness-Based July!

The NFXF Community Support Network groups are very busy all year long, filling members’ calendars with social events, educational seminars, fundraisers, business meetings, advocacy and awareness opportunities. While some months are busier than others, Fragile X Awareness Month in July always sees some “Xtra-special” activities.

Thirty-two LINKS groups participated in the National Fragile X Foundation’s Let ‘Em Know 5K, helping the NFXF raise over $45,000! In addition to the virtual walks, some of our groups gathered for actual walks, too! Check out the great pictures here from , and !

Colorado Fragile X Let Em Know

Colorado Let ‘Em Know!

New Jersey Let 'Em Know

New Jersey Let ‘Em Know!

Southeast Virginia Let 'Em Know

Southeast Virginia Let ‘Em Know!


Also, Fragile X Awareness Day was made official in Illinois and North Carolina this year, thanks to the efforts of LINKS leaders from those states who worked closely with their elected officials to make it happen. There are now six states that recognize Fragile X Awareness Day, with varying dates.

California: April 18
Connecticut: September 13
Louisiana, Massachusetts, Illinois, North Carolina: July 22

Around the LINKS Circuit

Massachusetts Wine Event 3 Massachusetts Wine Event 1 Massachusetts Wine Event 2


Denise Devine and her husband Gerry of  held their 3rd Wine Tasting & Silent Auction Fundraiser. Fifty-two people gathered at the Courtyard Marriott in Hadley to sample over 30 wines, some from local winemakers. Sean Barry of Four Seasons Wine & Liquor arranged the wine distributors, sampling and programs for the event. Curt Shumway from the Courtyard Marriot and Tim Ayre of Ayre Investments donated to cover the cost of the room rental. Sharyn Lincoln, coordinator at Boston’s Children’s Fragile X Clinic, was among the attendees. Auction items were donated by State Representative John Scibak, artist Patty Hayes, Costco and Four Seasons Wine & Liquor.

Phoenix FX Clinic Open House with FX Fam of PhxIn Phoenix, LINKS leader Ashley Nuesse worked with Fragile X Clinic Coordinator Kiran Aurora to hold the clinic’s first open house at Phoenix Children’s Hospital. Forty people attended the event, including a mixture of doctors, therapists, specialists and families. Clinic Director Dr. Robin Blitz spoke to the group, providing an overview of fragile X syndrome and the clinic’s future goals. Other speakers included Dr. Raun Melmed from Southwest Autism Research & Resource Center, Nannette Salasek from Raising Special Kids, and Ashley herself, who gave a brief overview of the local LINKS group, the . The event included raffles, food and information tables.

Tristate1 tristate 4 Tri state3


Tri state2Joe Garera of the  organized not one but two Awareness Day outings for families in his area! On July 13, the Tri-State group partnered with the Louisville Fragile X Clinic to attend the Louisville Bats baseball game. Debbie Lorence, clinic coordinator from the Louisville Fragile X Clinic, along with 18 family and friends attended the event, with families from Indiana and Kentucky traveling up to an hour and a half to attend!

On July 21, the Tri-State group partnered with Dr. Craig Erickson and the Cincinnati Fragile X Research and Treatment center for a Cincinnati Reds game. Over 60 family and friends, including Dr. Erickson and most of his staff, attended this event. Despite the extreme heat that day, families from Kentucky, Indiana and Ohio (some traveling more than three hours!) enjoyed the game and time together.


Calendar

August

  • 3 – Fragile X of Minnesota – Saturday Coffee
    Contact: Bonnie Korman SouthernMN@fragilex.org
  • 3 – Fragile X Links Central AR Meet-and-Greet at Dupree Park 10 am
    Contact: Crystal Chivers CentralAR@fragilex.org
  • 3 – Fragile X Families of Southeast Virginia – Parents Night Out TGIFriday’s, Newport News
    Contact: Lori Armer SoutheastVA@fragilex.org
  • 4 – NIEW Links Clarkston WA – Meeting St. Joes Hospital.
    Contact: Wendy Geiger NorthIDeastWA@fragilex.org
  • 7 – Fragile X LINKS Group of Eastern Massachusetts FXMNO
    Contact: Melissa Welin EasternMA@fragilex.org
  • 9 – 3rd Annual Fragile X Charity Golf Classic – Mistwood Golf Club, Romeoville, IL
    Contact: Missy Zolecki Chicago@fragilex.org
  • 10 – Fragile X Workshop:Transition – Fragile X Resource Center of Missouri
    Contact: Diane Southard StLouis@fragilex.org
  • 10 – Fragile X Families of Southeast Virginia – 3rd Annual Meet-and-Greet Family Picnic, Newport News
    Contact: Lori Armer SoutheastVA@fragilex.org
  • 24 – FX Dad’s Night Out At the Royals Game – Kansas FX LINKS Group
    Contact: NortheastKS@fragilex.org
  • 24 – Louisiana Fragile X LINKS Assoc. – Fragile X Awareness Beauty Pageant, Georgetown, LA
    Contact: Tammie Anderson CentralLA@fragilex.org