Agenda - National Fragile X Foundation

Fragile X Association of Southern California
Sunday, May 19th, 2013
1pm @ Whittier Senior Center
I. Call to Order. Time:_____________
II. 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
III. Approval of Last Meeting’s Minutes – See attach. Emailed on 5/16/2013
Board Members approval: _____________________________________________________________
IV. President’s Report – Janet
a. Seaside Therapeutics (Arbaclofen)
i. Statement from Dr. Paul Wang - See attach. Emailed on 5/16/2013
b. MIND Institute (Cognitive Training Study) - See attach. Emailed on 5/16/2013
c. National Fragile X Foundation updates
i. Need group picture to update LINKS group webpage.
ii. LINKS Group Meeting - See attach. Emailed on 5/16/2013
1. Date and Time: 6pm, Fri., Oct. 25th to 5pm, Sat., Oct. 26th, 2013.
2. Location: Crown Plaza Hotel, St. Louis Airport (St. Louis, MO)
3. 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.
V. Fragile X Clinic at Miller Children’s Hospital Updates – Sali
a. Additional office space approved. Move-in July 1st.
b. FX clinic continues to see new and existing families.
VI. Treasurer’s Report – Mary
a. Budget
b. Donations
VII. Old Business
a. FX Awareness Day, Thursday, April 18th
i. Autism Walk, Saturday, April 20th - Aaron and Crissy
ii. Parents Place Fair, Sunday, April 28th - Aaron and Crissy
VIII. New Business
a. Stephanie’s Day Resource Fair, Sat., June 8th from 10am to 2pm @ CBS Studios in Studio City
i. Board members attending?
b. FRAXSOCAL Support Groups
i. Send out survey to determine interest?
c. FRAXSOCAL website – Aaron
i. New information to add.
ii. Add picture of clinic.
d. FRAXSOCAL table cloth (Quotes) – Sali
i. Tablecloths $100 each. *Trying to get tablecloth donated.
ii. How many tablecloths? 1 or 2?
iii. Color of tablecloth? Red or Black?
e. Gifts for Donors (Engrave glass pieces) – Sali
i. Wording? – “In Appreciation w/ FRAXSOCAL logo” or “Thank You for Supporting
ii. Quotes: $20.00 per piece (Depending on editorial engrave.)
f. National FX Awareness Day, Monday, July 22nd
i. Plans?
IX. Family Fun Day
a. Living Desert Zoo – Anna
b. Lake Mission Viejo - Jennifer
X. FX Awareness Club - Janet
a. Santa Ana Zoo, Saturday, April 20th
b. Meet new team leaders.
XI. Newsletter (June) – Paula and Janet
a. Fragile X Awareness Group (Santa Ana Zoo) – Madi
b. Helpful Hints: AT websites - Janet
c. Coachella Valley Family Fun Day – Anna
d. Outreach Events: Autism Walk and Parents Place – Aaron
e. Working with schools FX Students – Christina Aguirre-Kolb
f. Seaside Therapeutics - Janet
XII. Calendar
a. Next board meeting: Sunday, July 14th
b. Board meeting dates: September 8th, and November 10th
XIII. Adjournment
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