FRAXA Newsletter Archives (pdf files)
2009
2008
2007
2006
2005
2004
2003
2002
2001
2000
1999
1998
Water Bottle $8
Deluxe custom water bottle sporting the FRAXA logo. Stainless steel with plastic lining and straw.
Donated to FRAXA by Trevor and Leslie Eddy, so
the entire price goes to fund Fragile X research.
Holiday Cards $1 each
New!
Created by young artists who have Fragile X syndrome. The artist's name and age, as well as a short explanation about Fragile X and FRAXA, are on the back cover. Spread the word!
Although it's a long time until Christmas, if you order now, we can print a larger batch and save more funds for the cause. You can order any quantity of each card.
Pendant $25
Handmade for FRAXA by Adrienne Ferro (www.funkyplanet.net) with dichroic glass, which shimmers with different colors according to the light.
Bail in silver- or gold-tone. Adrienne is donating these pins, so the entire price goes to fund Fragile X research.
Silver chain - 2mm, 26 inches long, 6g total weight $12
Medication Guide for Fragile X
updated and expanded 3/20/09
by Michael Tranfaglia, MD
Psychiatrist, Parent, FRAXA Medical Director
Detailed guide (100+ pages) to medications
commonly prescribed to help manage symptoms of Fragile X. This text
will help parents understand the behavioral symptoms of fragile X and
how medications act on these symptoms. Reference pages rate each drug's effectiveness,
safety, convenience, and cost.
The guide is not a medical textbook and does not take the place of a physician.
It is designed to serve as background and reference to help parents talk with
their physicians.
Available on CD or for download at
http://drmikespsychiatryblog.blogspot.com
Cost: $20
DVD - "Closing in on a Cure" $9
This DVD includes three features:
1) "Fragile X - Hitting the Mark" is a powerful, emotional look
at families dealing with Fragile X, top researchers who are
working to find a cure, and FRAXA's efforts to support them. Produced by
Debbie Stevenson (11 minutes)
2) Public Service Announcement by storm tracker Jim Cantore from The Weather Channel (30 seconds)
3) "Fragile X" on Real Moms, Real Stories, Real Savvy (www.realsavvymoms.com) (10 minutes)
FRAXA CD $5
One CD contains our videos, 5
years of newsletters, a multimedia website all about Fragile X, articles, 3 movies (in low-resolution format), our brochure, and more.
Also included: the Medication Guide,
Fragile X - A to Z, and a Powerpoint presentation on Fragile X and FRAXA.
Fragile X Awareness Bands
These silicone rubber wristbands say "Cure Fragile X" and
"www.FRAXA.org." A favorite with teens and kids! Support
research and raise awareness at the same time
Order 1-4 wristbands at $3 each
Order 5 or more wristbands at $2 each
Fragile X Awareness Magnets
$3
These magnets are shaped like FRAXA's "X" and say "Cure Fragile X" and
"www.FRAXA.org." They look great on vehicles and are very effective for raising awareness of Fragile X.
A fun
gift for everyone you know!
6x8 inches
FRAXA Logo
Gold-plated Lapel "X" Pin $10
Sport FRAXA's logo on jackets and sweaters.
FRAXA Logo Jibbitz $3
Adorn your Croc sandals with this cute FRAXA logo.
1 inch wide.
X Stories; The Personal Side of Fragile X
$19.95
Edited by Charles Luckmann and Paul Piper
An anthology of riveting, uplifting, and sometimes humorous essays by parents, siblings, physicians, and therapists.
Dear Megan; Letters on Life, Love and Fragile X
$14.95
Written by Mary Beth Busby and Megan Massey, 2006
"Megan and Mary Beth are brave to share their deeply personal story of adversity, love, and triumph during their journey to discover the answers to Fragile X. This
is a wonderful book."
- U.S. Senator Chuck Hagel (Nebraska)
Fragile X Family Cookbook -
Food eXtraordinaire
$13
Edited by Sally Nantais and Mary Beth Langan,
Parents
This red, white and black spiral cookbook includes
154 recipes from families, researchers, politicians,
and other eXtraordinary people from Australia to
New Hampshire to New Mexico.
Fragile X - A to Z; A Guide for Families by Families
$15
Edited by Sally Nantais, Mary Beth Langan, and Wendy Dillworth, Parents
(2006)
This 100+ page guide is intended to help families cope with daily challenges of
living with a child or adult who has Fragile X. These anecdotes were
provided by parents, grandparents, friends, and professionals who participate in the
FRAXA Listserv, a free electronic mail support group dedicated to discussion of
Fragile X. Also included on the FRAXA CD.
FRAXA is offering this book free of charge. Download pdf here. Please feel free to support our work with a donation.
Educating Boys with Fragile X Syndrome
$10
By Gail Spiridigliozzi, Ph.D., et. al.
Duke University Medical Center
This 20-page guide is written for
parents, teachers and therapist to give specific strategies for education.
Fragile X Information Cards $5 per 75 cards
These business size cards are perfect for handing to people who know
little about fragile X, in the grocery store or wherever else a quick explanation
is needed. Laminated, durable cards.
"Cure Fragile X" labels $4
Spread the word about Fragile X on every
letter and package you send. These 1.75
by .5 inch labels come 34 per sheet.
Available on white or clear labels.
FRAXA balloons 10 for $1
Teal balloons with the FRAXA logo in white
FRAXA Logo Tshirts $15
White heavyweight 100% cotton, FRAXA teal and black logo on left chest.
Spelling Love with an X: A Mother, a Son, and the Gene That Binds Them
by Clare Dunsford
A memoir and poetic meditation on raising a child with a Fragile X.
Clare Dunsford is the mother of a young adult son, J.P., who has Fragile X. Spelling Love with an X is the first literary memoir about living with Fragile X, their families, and treatment professionals.
Recommended by FRAXA, available from Amazon.com.
Proceeds fund Fragile X research. Buy here with PayPal or send your check
payable to FRAXA. We also accept major credit cards by fax, regular "snail mail", or phone.
Please use this
order form.
FRAXA will not sell or trade a
donor's personal information to any other entity unless we receive written permission from the donor.
Donate to FRAXA
Become a member of FRAXA to keep up with research, new grant
awards, events, and more. Support
our efforts with a tax-deductible donation of any amount.
