Fragile X Association of Southern California

Agenda

Sunday, May 19th, 2013

1pm @WhittierSenior Center

  1. Call to Order. Time:______
  1. Roll Call.

Paula Paez, Aaron Finney,Crissy Finney, Monique Johnson,Anna Miranda, Janet Rivera, Cindy Ross, Mary Seward, Charlotte Spahr, and Brandon Wetzler

Not Present: Sali Farber and Naomi Star

  1. Approval of Last Meeting’s Minutes – See attach. Emailed on 5/16/2013

Board Members approval: ______

  1. President’s Report – Janet
  2. Seaside Therapeutics (Arbaclofen)
  3. Statement from Dr. Paul Wang - See attach. Emailed on 5/16/2013
  4. MIND Institute (Cognitive Training Study) - See attach. Emailed on 5/16/2013
  5. National Fragile X Foundation updates
  6. Need group picture to update LINKS group webpage.
  7. LINKS Group Meeting - See attach. Emailed on 5/16/2013
  8. Date and Time: 6pm, Fri., Oct. 25th to 5pm, Sat., Oct. 26th, 2013.
  9. Location: Crown Plaza Hotel, St. Louis Airport (St. Louis, MO)
  10. Pay for 1 night hotel w/ dinner Friday evening, breakfast & lunch on Saturday for one person. Second person may attend but will not pay for flight, only hotel and meals.Flight expense reimburse after the event. *Not including checked luggage.
  1. Fragile X Clinic at Miller Children’s Hospital Updates –Sali
  2. Additional office space approved. Move-in July 1st.
  3. FX clinic continues to see new and existing families.
  1. Treasurer’s Report – Mary
  2. Budget
  3. Donations
  1. Old Business
  2. FX Awareness Day, Thursday, April 18th
  3. Autism Walk, Saturday, April 20th - Aaron and Crissy
  4. Parents Place Fair, Sunday, April 28th- Aaron and Crissy
  1. New Business
  2. Stephanie’s Day Resource Fair, Sat., June 8th from 10am to 2pm @ CBS Studios in Studio City
  3. Board members attending?
  4. FRAXSOCAL Support Groups
  5. Send out survey to determine interest?
  6. FRAXSOCAL website – Aaron
  7. New information to add.
  8. Add picture of clinic.
  9. FRAXSOCAL table cloth (Quotes)–Sali
  10. Tablecloths $100 each. *Trying to get tablecloth donated.
  11. How many tablecloths? 1 or 2?
  12. Color of tablecloth? Red or Black?
  1. Gifts for Donors (Engrave glass pieces)– Sali
  2. Wording? – “In Appreciation w/ FRAXSOCAL logo” or “Thank You for Supporting w/FRAXSOCAL logo”
  3. Quotes: $20.00 per piece (Depending on editorial engrave.)
  4. National FX Awareness Day, Monday, July 22nd
  5. Plans?
  1. Family Fun Day
  2. Living Desert Zoo – Anna
  3. Lake MissionViejo - Jennifer
  1. FX Awareness Club - Janet
  2. Santa Ana Zoo, Saturday, April 20th
  3. Meet new team leaders.
  1. Newsletter (June)–Paula and Janet
  2. Fragile X Awareness Group (Santa Ana Zoo) –Madi
  3. Helpful Hints: AT websites - Janet
  4. Coachella Valley Family Fun Day – Anna
  5. Outreach Events: Autism Walk and Parents Place –Aaron
  6. Working with schools FX Students –Christina Aguirre-Kolb
  7. Seaside Therapeutics -Janet
  1. Calendar
  2. Next board meeting: Sunday, July 14th
  3. Board meeting dates: September 8th, and November 10th
  1. Adjournment