Fragile X LINKS Group of Eastern Massachusetts http://www.fragilexma.org Tue, 02 Apr 2013 18:47:21 +0000 en-US hourly 1 http://wordpress.org/?v=3.4.2 Fragile X Family Event in Western, MA! http://www.fragilexma.org/regional-links-groups/fragile-x-family-event-in-western-ma/ http://www.fragilexma.org/regional-links-groups/fragile-x-family-event-in-western-ma/#comments Tue, 02 Apr 2013 18:47:21 +0000 Melissa http://www.fragilexma.org/?p=1001 Add this to your calendar!!

The Fragile X Resource Center of Western Massachusetts will be hosting a fragile X family picnic on Sunday, June 9, 2013!

The event will be held at Look Park in Northampton, MA. They ask that you bring something to grill and a dessert or side dish to share.

Contact . . . » Continue reading]]> Add this to your calendar!!

The Fragile X Resource Center of Western Massachusetts will be hosting a fragile X family picnic on Sunday, June 9, 2013!

The event will be held at Look Park in Northampton, MA. They ask that you bring something to grill and a dessert or side dish to share.

Contact Denise Devine at frxrcofwmass@aol.com for more details!

]]> http://www.fragilexma.org/regional-links-groups/fragile-x-family-event-in-western-ma/feed/ 2 Boston Children’s Hospital research opportunity! http://www.fragilexma.org/research/boston-childrens-hospital-research-opportunity/ http://www.fragilexma.org/research/boston-childrens-hospital-research-opportunity/#comments Tue, 02 Apr 2013 13:52:31 +0000 Melissa http://www.fragilexma.org/?p=985 Boston Children’s Hospital recently became a site for a Novartis drug trial testing an mGluR5 antagonist in adults. Additionally, a Novartis trial of the same drug in adolescents is actively recruiting at BCH.

The adult study is for individuals with fragile X ages 18-45, while the adolescent study is for 12-18 year olds. The . . . » Continue reading]]> Boston Children’s Hospital recently became a site for a Novartis drug trial testing an mGluR5 antagonist in adults. Additionally, a Novartis trial of the same drug in adolescents is actively recruiting at BCH.

The adult study is for individuals with fragile X ages 18-45, while the adolescent study is for 12-18 year olds. The drug, AFQ056, decreases the activity of mGluR5 in the brain, and the study is looking at whether this has any affect on behavioral symptoms of fragile X. Study participants would be asked to complete 9 study visits over the course of 20 weeks, and would be reimbursed for travel expenses.

Anyone interested can contact Lucy Abernethy, by email at lucy.abernathy@childrens.harvard.edu; or by phone: (857) 218-4938, for more information.

More details about either trial can also be found at clinicaltrials.gov; the identifier for the adult study is NCT01253629, and for the adolescent study is NCT01357239.

]]> http://www.fragilexma.org/research/boston-childrens-hospital-research-opportunity/feed/ 0 USC Adolescent Language Study http://www.fragilexma.org/research/usc-adolescent-language-study/ http://www.fragilexma.org/research/usc-adolescent-language-study/#comments Tue, 02 Apr 2013 13:34:05 +0000 Melissa http://www.fragilexma.org/?p=978 The Neurodevelopmental Disorders Lab at the University of South Carolina has a newly-funded research study examining how language abilities impact the success of adolescents with fragile X syndrome after graduating high school and entering into adulthood. They are currently recruiting adolescent males who are 14-22 years of age with the full mutation of fragile . . . » Continue reading]]> The Neurodevelopmental Disorders Lab at the University of South Carolina has a newly-funded research study examining how language abilities impact the success of adolescents with fragile X syndrome after graduating high school and entering into adulthood. They are currently recruiting adolescent males who are 14-22 years of age with the full mutation of fragile X. The study is longitudinal and participation includes four annual, day and a half visits completing various activities, including interviews with the parent(s) in the lab on the USC campus. Travel costs are covered by the project.

The Neurodevelopmental Disorders Lab at the University of South Carolina under Dr. Jane Roberts has been conducting research in fragile X syndrome for over 15 years. Their work is focused on understanding the development of children with neurodevelopmental disabilities, including autism and fragile X syndrome.

Interested families can contact Debra Resinger, a research specialist with the lab, by e-mail USCDevLab@gmail.com or phone (803)777-5676. You may also visit their web site http://www.uscdevlab.com.

There is an electronic brochure for the study listed above to include more information about the lab and current research attached.

Electronic Brochure Language Study

]]> http://www.fragilexma.org/research/usc-adolescent-language-study/feed/ 0 A Grant for Traveling to Clinics http://www.fragilexma.org/nfxf-fragile-xtras/a-grant-for-traveling-to-clinics/ http://www.fragilexma.org/nfxf-fragile-xtras/a-grant-for-traveling-to-clinics/#comments Wed, 05 Dec 2012 18:36:39 +0000 Melissa http://www.fragilexma.org/?p=959

Planning a trip to a Fragile X Clinic? Ask your clinic’s coordinator about the Fly With Me Fund grant which helps with travel and lodging!

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Planning a trip to a Fragile X Clinic? Ask your clinic’s coordinator about the Fly With Me Fund grant which helps with travel and lodging!

]]> http://www.fragilexma.org/nfxf-fragile-xtras/a-grant-for-traveling-to-clinics/feed/ 0 Top 10 Things a Teacher Should Know About Fragile X Syndrome http://www.fragilexma.org/nfxf-fragile-xtras/top-10-things-a-teacher-should-know-about-fragile-x-syndrome/ http://www.fragilexma.org/nfxf-fragile-xtras/top-10-things-a-teacher-should-know-about-fragile-x-syndrome/#comments Tue, 04 Dec 2012 18:34:06 +0000 Melissa http://www.fragilexma.org/?p=954

Students with Fragile X Syndrome can often be like the proverbial girl with the curl in the middle of her forehead – when they’re good, they’re very, very good, and when they are bad they are horrid.

Knowing these 10 things will help bring out the good and minimize the horrid!

The #1 . . . » Continue reading]]>

Students with Fragile X Syndrome can often be like the proverbial girl with the curl in the middle of her forehead – when they’re good, they’re very, very good, and when they are bad they are horrid.

Knowing these 10 things will help bring out the good and minimize the horrid!

The #1 thing teachers should know about students with FXS is that they are prone to hyperarousal and anxiety.

It is how their nervous systems are wired. Most recommendations that follow are geared to maximizing focus and cooperation by minimizing hyperarousal and anxiety: <<Read More>>

]]> http://www.fragilexma.org/nfxf-fragile-xtras/top-10-things-a-teacher-should-know-about-fragile-x-syndrome/feed/ 0 What is #GivingTuesday? http://www.fragilexma.org/nfxf-fragile-xtras/what-is-givingtuesday/ http://www.fragilexma.org/nfxf-fragile-xtras/what-is-givingtuesday/#comments Thu, 08 Nov 2012 17:15:23 +0000 Melissa http://www.fragilexma.org/?p=937

Thanksgiving is right around the corner, and for most people that means spending time with family while enjoying great meals, good times, and a big helping of gratitude.

Then comes Black Friday, the day when stores nationwide have blowout sales and people line up around the block for the best deals.

After that . . . » Continue reading]]>

Thanksgiving is right around the corner, and for most people that means spending time with family while enjoying great meals, good times, and a big helping of gratitude.

Then comes Black Friday, the day when stores nationwide have blowout sales and people line up around the block for the best deals.

After that is Cyber Monday, in which people do it all over again, except this time through online stores.

But have you heard of #GivingTuesday? It is the giving season’s opening day, with the emphasis not on consuming but on giving, and you can help make it a success for the National Fragile X Foundation! <<Read More>>

]]> http://www.fragilexma.org/nfxf-fragile-xtras/what-is-givingtuesday/feed/ 0 New LINKS Groups Sprouting Across the Country! http://www.fragilexma.org/regional-links-groups/new-links-groups-sprouting-across-the-country/ http://www.fragilexma.org/regional-links-groups/new-links-groups-sprouting-across-the-country/#comments Wed, 07 Nov 2012 17:14:03 +0000 Melissa http://www.fragilexma.org/?p=942

The LINKS Support Network is a wonderful way to get involved in the Fragile X community on a local level, to meet new families, share experiences, work together to raise awareness, advocate, fund raise, build friendships and most importantly, be a part of the support for families just like yours. Visit our LINKS . . . » Continue reading]]>

The LINKS Support Network is a wonderful way to get involved in the Fragile X community on a local level, to meet new families, share experiences, work together to raise awareness, advocate, fund raise, build friendships and most importantly, be a part of the support for families just like yours. Visit our LINKS Support Network map to see all of the LINKS groups and find the nearest one to you.

It’s been a very busy fall for the LINKS Support Network! We have many new groups and some established groups changing leadership. It is a very exciting time for families with new opportunities for social and awareness events, fund raising, advocacy and educational opportunities. <<Read More>>

]]> http://www.fragilexma.org/regional-links-groups/new-links-groups-sprouting-across-the-country/feed/ 0 Full Mutation, Premutation or No Mutation At All http://www.fragilexma.org/nfxf-fragile-xtras/full-mutation-premutation-or-no-mutation-at-all/ http://www.fragilexma.org/nfxf-fragile-xtras/full-mutation-premutation-or-no-mutation-at-all/#comments Tue, 06 Nov 2012 21:13:03 +0000 Melissa http://www.fragilexma.org/?p=932

Here in the Fragile X world we spend a lot of time parsing mutations, CGG repeat numbers and trying to define Fragile X. From a medical and scientific point of view, that effort is necessary so that clinicians and researchers can communicate with each other in a descriptive and . . . » Continue reading]]>

Here in the Fragile X world we spend a lot of time parsing mutations, CGG repeat numbers and trying to define Fragile X. From a medical and scientific point of view, that effort is necessary so that clinicians and researchers can communicate with each other in a descriptive and mutually understood way. Defining things and being as specific as possible is absolutely essential in research and treatment. <<Read More>>

]]> http://www.fragilexma.org/nfxf-fragile-xtras/full-mutation-premutation-or-no-mutation-at-all/feed/ 0 Fall Family Social – Apple Picking! http://www.fragilexma.org/events/fall-family-social-apple-picking/ http://www.fragilexma.org/events/fall-family-social-apple-picking/#comments Wed, 19 Sep 2012 00:58:41 +0000 Melissa http://www.fragilexma.org/?p=910 Join us at Shelburne Farms, on Sunday, October 14, 2012 beginning at 11:45 AM, for the Fragile X LINKS Group of Eastern Massachusetts Fall Family Social!

Each child will receive a quarter-peck apple picking bag and a small pumpkin.

We have reserved a tented picnic area from 11:45 to 1:15; please feel free to . . . » Continue reading]]> Join us at Shelburne Farms, on Sunday, October 14, 2012 beginning at 11:45 AM, for the Fragile X LINKS Group of Eastern Massachusetts Fall Family Social!

Each child will receive a quarter-peck apple picking bag and a small pumpkin.

We have reserved a tented picnic area from 11:45 to 1:15; please feel free to bring a picnic lunch for your family to enjoy.

There will also be a hayride, moon bounce, hay maze, hay climbing pyramid, pedal tractors & tractor play area as well as farm animals to visit!

Apple cider and cider donuts will be provided for all.

Please RSVP by Wednesday, October 10, 2012 by either e-mailing melissa@fragilexma.org or calling (617) 858-0392. Please provide the number of people attending total AND the number of children who will need an apple picking bag!

We look forward to seeing everyone there!

An event flyer is attached:

Apple Picking Flyer

]]> http://www.fragilexma.org/events/fall-family-social-apple-picking/feed/ 0 Seaside Therapeutics & Roche Announce Alliance to Advance Treatments http://www.fragilexma.org/in-the-news/seaside-therapeutics-roche-announce-alliance-to-advance-treatments/ http://www.fragilexma.org/in-the-news/seaside-therapeutics-roche-announce-alliance-to-advance-treatments/#comments Tue, 19 Jun 2012 15:32:01 +0000 Eric http://www.fragilexma.org/?p=903 Seaside Therapeutics of Cambridge, MA along with Hoffman-La Roche announced their landmark alliance today to advance treatment for fragile X syndrome and autism spectrum disorders. The National Fragile X Foundation shared the press release on their website earlier today and plan to add additional commentary later this afternoon. Be sure to stop in and . . . » Continue reading]]> Seaside Therapeutics of Cambridge, MA along with Hoffman-La Roche announced their landmark alliance today to advance treatment for fragile X syndrome and autism spectrum disorders. The National Fragile X Foundation shared the press release on their website earlier today and plan to add additional commentary later this afternoon. Be sure to stop in and check out the post for the latest updates!

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