Tuesday, September 13, 2011
Connecticut's Fragile X Awareness Day in the News
Connecticut just had their state Fragile X Awareness Day, and CT Now's Morning news did a feature with Fragile X Society of Connecticut's Andy Selinger! Watch the video.
2nd Annual Hat Party
NFXF Board Member Deborah Kwan is hosting the 2nd Annual Hat Party to benefit the NFXF. Come wearing your favorite hat for a night of drinks, appetizers, and dancing! The Northern California event will also be attended by NFXF board and staff members.
Event details:
Saturday, September 24
7:30 pm - 10:30 pm
Lafayette Library and Learning Center
3491 Mt. Diablo Blvd.
Lafayette, CA 94549
To purchase tickets ($75 each) or learn more about the event, contact (800) 688-8765 or meghan@fragilex.org
Event details:
Saturday, September 24
7:30 pm - 10:30 pm
Lafayette Library and Learning Center
3491 Mt. Diablo Blvd.
Lafayette, CA 94549
To purchase tickets ($75 each) or learn more about the event, contact (800) 688-8765 or meghan@fragilex.org
Monday, September 12, 2011
$2.2 Million Grant To Enhance Public Health Knowledge About Fragile X Syndrome
From the New York State OPWDD press release
... and a few quotes from the press release(STATEN ISLAND) The New York State Office for People With Developmental Disabilities’ (OPWDD) Institute for Basic Research in Developmental Disabilities (IBR) has been selected to receive a $2.2 million, four-year cooperative agreement grant from the National Center on Birth Defects and Developmental Disabilities (NCBDDD) of the Centers for Disease Control and Prevention (CDC) for research on fragile X syndrome, Commissioner Courtney Burke announced today.
Commissioner Burke said, “This collaborative grant will provide the resources necessary to improve the care, health, and lives of individuals with fragile X syndrome, with potential benefits to other groups affected by intellectual disabilities.”
NFXF Executive Director Robby Miller said, “The NFXF is committed to seeing that all individuals in the US who are diagnosed with fragile X syndrome receive care that is based on the best available data. This grant will ensure that is the case, and we are honored to work with IBR, the CDC, and the Data Coordinating Center.”
Dr. [W. Ted] Brown said, “I am very pleased to receive this grant on behalf of the FXCRC and in support of the many families affected by fragile X syndrome. In collaboration with the NFXF and the CDC, we will now be able to develop a data collection and analysis approach that will lead to a greater understanding of this syndrome, co-occurring conditions and associated risk factors, and conventional treatments. This approach could provide valuable information for targeted interventions.”
Tuesday, August 30, 2011
Spotlight Group: Fragile X Families of SW Chicago
The Fragile X Families of SW Chicago is a newly formed and very active parent support group headed by LINKS Leader, Missy Zolecki.
Missy and her husband, Mark have been married for almost 13 years. They were aware of the FX gene in Missy’s family and thought they had avoided passing on the gene to their first born son, only to find out when Matt was 12 days old that he did in fact have Fragile X.
Focus on Fundraisers: August
Fragile X Charity Golf Classic
On August 12, Missy Zolecki and the SW Chicago LINKS group held its first Fragile X Charity Golf Classic in Romeoville, IL. In addition to the tournament, the event offered some unique contests for players as they moved along the course. After golfing, attendants bid on great auction items and enjoyed an awards reception. The event was a huge success with 125 people in attendance and the group is looking forward to holding the tournament again next year.
Wild West Relay
On August 12-13, Ben Hinnen and Colorado Fragile X added a second fundraising event that followed the successful Elephant Rock Cycling Festival. The group formed two teams that trained hard to complete the 200 mile, 2 day relay while raising money on FirstGiving.com. They finished 9th overall and surpassed their fundraising goal! Many thanks go out to all 24 runners for sacrificing their time and bodies to raise money for Fragile X!
Biggest Loser Event
Anytime Fitness in Prescott Valley, AZ held its third “Challenge X” boot camp to benefit the NFXF on August 20, 2011. Participants showed up once again for the day-long workout led by Biggest Loser Season 7 fan favorites Sione and Filipe Fa. Each event continues to be more successful than the last, and the NFXF is very grateful to Anytime Fitness owner Leanne Shearer and Fragile X mom Amy Champ for their continued support and organization of the event.
The NFXF relies on the support of our dedicated fundraisers. If you'd like to hold a fundraiser, contact our Development Coordinator, Meghan McMurray at Meghan@FragileX.org.
On August 12, Missy Zolecki and the SW Chicago LINKS group held its first Fragile X Charity Golf Classic in Romeoville, IL. In addition to the tournament, the event offered some unique contests for players as they moved along the course. After golfing, attendants bid on great auction items and enjoyed an awards reception. The event was a huge success with 125 people in attendance and the group is looking forward to holding the tournament again next year.
Wild West Relay
On August 12-13, Ben Hinnen and Colorado Fragile X added a second fundraising event that followed the successful Elephant Rock Cycling Festival. The group formed two teams that trained hard to complete the 200 mile, 2 day relay while raising money on FirstGiving.com. They finished 9th overall and surpassed their fundraising goal! Many thanks go out to all 24 runners for sacrificing their time and bodies to raise money for Fragile X!
Biggest Loser Event
Anytime Fitness in Prescott Valley, AZ held its third “Challenge X” boot camp to benefit the NFXF on August 20, 2011. Participants showed up once again for the day-long workout led by Biggest Loser Season 7 fan favorites Sione and Filipe Fa. Each event continues to be more successful than the last, and the NFXF is very grateful to Anytime Fitness owner Leanne Shearer and Fragile X mom Amy Champ for their continued support and organization of the event.
The NFXF relies on the support of our dedicated fundraisers. If you'd like to hold a fundraiser, contact our Development Coordinator, Meghan McMurray at Meghan@FragileX.org.
Back to School Without a Bang
By Marcia Braden, PhD
Going back to school after a relaxing summer can be quite a challenge. The transition can be anxiety-provoking enough that it’s worth a column to review some basic guidelines.
Summer break usually includes a variety of outdoor experiences that incorporate physical activity. The less structured activities of summer are different from the school environment. Even though the imposed structure of the classroom can be positive, the transition period of getting ready to go back into the classroom can be difficult for students with fragile X syndrome.
Several strategies can help in guiding a successful transition. If the student is going back to the same school with the same teaching staff, the transition process is easier and requires less support. When the student changes schools, neighborhoods, or programs, additional support is required.
Say It With Pictures
Prior to the start of school, take digital pictures of the school, classroom, playground or school ground and school staff. These pictures can then be incorporated into a story about going back to school. The student can either read or be read the story. Repetition of the story can provide familiarity and predictability, making the unknown or novel experience less intimidating. Another option is to make a video of the school facility along with a welcome message from the teaching staff that will support the student. Other staff members working around the school (janitors, school secretaries and cafeteria staff) should also be included. Watching the school video will become a pastime that is both enjoyable and a positive strategy.
Find a Friend
Whenever possible, it is helpful to find classmates to accompany the student with FXS when going back to school. This buddy can help orient the student with FXS, perhaps describing what to expect and what might be different in the coming year. The phone or email can be used in the weeks leading up to the first day.
Establish a Routine
Walking to school with a friend or sibling, or riding together in a carpool or school bus is helpful. Routine brings predictability, which is self-calming and reassuring. When the early morning routine becomes habituated, entering the classroom and starting the day simply becomes an extension of that process.
Tell a story
If your child is returning to the same school in the fall, social stories can often assist in a less direct way while reducing anxiety about the upcoming school year. The stories can include a theme about how exciting it is to go back to school. They can conclude with a description of the strategies mentioned above, a list of classmates’ names, and a biography of the new teacher.
Beginning the year without a “bang” of discomfort can be easier when proactive strategies are employed. It is very important to take time to plan the transition before school starts so that the beginning can set a positive cycle in motion. We know that individuals with FXS habituate routines rather quickly, and find comfort in repetition. Making that routine available before the first day of school will certainly increase the likelihood that the rest of the school year will be positive and productive. Good luck with your transition and may his school year be the best ever.
Reprinted from the NFXF Quarterly September 2005
Marcia L. Braden, PhD. is a licensed psychologist with a clinical practice specializing in children and adolescents. She is the author of Fragile – Handle With Care: More About Fragile X Syndrome. Dr. Braden is a member of the Scientific and Clinical Advisory Board to the National Fragile X Foundation. Email: info@marciabraden.com
Going back to school after a relaxing summer can be quite a challenge. The transition can be anxiety-provoking enough that it’s worth a column to review some basic guidelines.
Summer break usually includes a variety of outdoor experiences that incorporate physical activity. The less structured activities of summer are different from the school environment. Even though the imposed structure of the classroom can be positive, the transition period of getting ready to go back into the classroom can be difficult for students with fragile X syndrome.
Several strategies can help in guiding a successful transition. If the student is going back to the same school with the same teaching staff, the transition process is easier and requires less support. When the student changes schools, neighborhoods, or programs, additional support is required.
Say It With Pictures
Prior to the start of school, take digital pictures of the school, classroom, playground or school ground and school staff. These pictures can then be incorporated into a story about going back to school. The student can either read or be read the story. Repetition of the story can provide familiarity and predictability, making the unknown or novel experience less intimidating. Another option is to make a video of the school facility along with a welcome message from the teaching staff that will support the student. Other staff members working around the school (janitors, school secretaries and cafeteria staff) should also be included. Watching the school video will become a pastime that is both enjoyable and a positive strategy.
Find a Friend
Whenever possible, it is helpful to find classmates to accompany the student with FXS when going back to school. This buddy can help orient the student with FXS, perhaps describing what to expect and what might be different in the coming year. The phone or email can be used in the weeks leading up to the first day.
Establish a Routine
Walking to school with a friend or sibling, or riding together in a carpool or school bus is helpful. Routine brings predictability, which is self-calming and reassuring. When the early morning routine becomes habituated, entering the classroom and starting the day simply becomes an extension of that process.
Tell a story
If your child is returning to the same school in the fall, social stories can often assist in a less direct way while reducing anxiety about the upcoming school year. The stories can include a theme about how exciting it is to go back to school. They can conclude with a description of the strategies mentioned above, a list of classmates’ names, and a biography of the new teacher.
Beginning the year without a “bang” of discomfort can be easier when proactive strategies are employed. It is very important to take time to plan the transition before school starts so that the beginning can set a positive cycle in motion. We know that individuals with FXS habituate routines rather quickly, and find comfort in repetition. Making that routine available before the first day of school will certainly increase the likelihood that the rest of the school year will be positive and productive. Good luck with your transition and may his school year be the best ever.
Reprinted from the NFXF Quarterly September 2005
Marcia L. Braden, PhD. is a licensed psychologist with a clinical practice specializing in children and adolescents. She is the author of Fragile – Handle With Care: More About Fragile X Syndrome. Dr. Braden is a member of the Scientific and Clinical Advisory Board to the National Fragile X Foundation. Email: info@marciabraden.com
Friday, July 29, 2011
Focus on Fundraisers: July
Congratulations to some very special Awareness Day Fundraisers:
Carmelina's Wine Tasting
On Sunday, July 24th, the Fragile X Resource Group of Western Massachusetts gathered at Carmelina's restaurant for appetizers and wine to promote Fragile X Awareness. Guests with a ticket to the event enjoyed 25 different wines, 15% off dinner, and a raffle. A local liquor store provided the wine, and the owner made a booklet with the wines, prices, and discounts if people ordered from his store. 61 people attended the tasting, and the group is already looking forward to organizing a second event.
Finster Murphy Seafood Market Fundraiser
On July 22nd, Joey Dissette's summer job was more than just a way to earn some extra money. He approached owners Kathy Murphy & Patrick Gibson and asked if they could promote Fragile X Awareness Day to customers. They were more than willing - and even agreed to donate a percentage of the day's proceeds to the NFXF! Business was double that which they would normally see on a Friday and the owners are planning to promote National Fragile X Awareness Day again in 2012.
Fundraiser at the Intercontinental Exchange
Carmelina's Wine Tasting
On Sunday, July 24th, the Fragile X Resource Group of Western Massachusetts gathered at Carmelina's restaurant for appetizers and wine to promote Fragile X Awareness. Guests with a ticket to the event enjoyed 25 different wines, 15% off dinner, and a raffle. A local liquor store provided the wine, and the owner made a booklet with the wines, prices, and discounts if people ordered from his store. 61 people attended the tasting, and the group is already looking forward to organizing a second event.
Finster Murphy Seafood Market Fundraiser
On July 22nd, Joey Dissette's summer job was more than just a way to earn some extra money. He approached owners Kathy Murphy & Patrick Gibson and asked if they could promote Fragile X Awareness Day to customers. They were more than willing - and even agreed to donate a percentage of the day's proceeds to the NFXF! Business was double that which they would normally see on a Friday and the owners are planning to promote National Fragile X Awareness Day again in 2012.
Fundraiser at the Intercontinental Exchange
After attending Advocacy Day earlier this year, Louis Barbera decided to become more involved in the Fragile X world. As Fragile X Awareness Day approached he saw an opportunity to get the word out to 500 of his colleagues at the Intercontinental Exchange (ICE). He made up a flyer which included basic facts about Fragile X, a photo of his son, and an appeal to support the National Fragile X Foundation. Barbera put the flyer on every trader's desk and sent it to every one of his clients across the globe. He also wore a "Got Fragile X?" shirt to spread further awareness on July 22nd. He received an overwhelming response, and will continue to raise money and awareness for Fragile X every year with support and inspiration from his wife, Heather Barbera.
If you'd like to do your own fundraisers, Development Coordinator Meghan McMurray at the NFXF will be happy to help out. Contact her at meghan@fragilex.org or call 1-800-688-8765.
If you'd like to do your own fundraisers, Development Coordinator Meghan McMurray at the NFXF will be happy to help out. Contact her at meghan@fragilex.org or call 1-800-688-8765.
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