Fragile X LINKS Group of Eastern Massachusetts http://www.fragilexma.org Wed, 21 Mar 2012 05:09:58 +0000 en hourly 1 http://wordpress.org/?v=3.3.2 April 14, 2012 – Tracy & Mouse come to Worcester, MA! http://www.fragilexma.org/events/april-14-2012-tracy-mouse-come-to-worcester-ma/ http://www.fragilexma.org/events/april-14-2012-tracy-mouse-come-to-worcester-ma/#comments Thu, 15 Mar 2012 13:12:09 +0000 Melissa http://www.fragilexma.org/?p=883 We are very excited to announce the details of our first conference! There is only room for 200 people so please register ASAP!

Hyperarousal & Sensory Integration Strategies for Home and School

Date: Saturday, April 14, 2012 Time: 8:00 AM – 4:00 PM Where: Arthur and Martha Pappas Amphitheatre University of . . . » Continue reading]]> We are very excited to announce the details of our first conference! There is only room for 200 people so please register ASAP!

Hyperarousal & Sensory Integration
Strategies for Home and School

Date:
Saturday, April 14, 2012
Time:
8:00 AM – 4:00 PM
Where:
Arthur and Martha Pappas Amphitheatre
University of Massachusetts Medical School
55 Lake Avenue North
Worcester, MA 01655
Hosted by:
Fragile X LINKS Group of Eastern Massachusetts
Fragile X Resource Center of Western Massachusetts
Children’s Hospital Boston, Fragile X Program
Cost:
Pre-Registration (Received By March 31): $50
Walk In (April 14, 2012): $60
Includes breakfast, lunch and materials.
Conference Brochure and Registration Form

Featured Speakers:

  • Tracy Murnan Stackhouse, MA, OTR
    Developmental FX, Denver, CO
  • Sarah Sharfenaker, MA CCC-SLP
    Developmental FX, Denver, CO
  • Sharyn Lincoln, M.S., C.G.C.
    Children’s Hospital Boston, Boston, MA
  • Craig Penz
    Seaside Therapeutics, Cambridge, MA

Audience

Families, educators, occupational therapists, speech/language pathologists and other providers who care for and work with children and adults with fragile X syndrome and autism spectrum disorders.

]]> http://www.fragilexma.org/events/april-14-2012-tracy-mouse-come-to-worcester-ma/feed/ 0 Save the Date! Tracy & Mouse are coming back to Massachusetts! http://www.fragilexma.org/events/save-the-date-tracy-mouse-are-coming-back-to-massachusetts/ http://www.fragilexma.org/events/save-the-date-tracy-mouse-are-coming-back-to-massachusetts/#comments Tue, 28 Feb 2012 23:52:26 +0000 Eric http://www.fragilexma.org/?p=810 Hosted by: Fragile X LINKS Group of Eastern Massachusetts Fragile X Resource Center of Western Massachusetts

Saturday, April 14, 2012

Featuring Special Guest Speakers

Tracy Stackhouse and Mouse Scharfenaker from Developmental FX! Tracy and Mouse will be speaking about core issues in fragile X syndrome with a focus on understanding . . . » Continue reading]]> Fragile X Educational Conference

Saturday, April 14, 2012

Featuring Special Guest Speakers

Tracy Stackhouse and Mouse Scharfenaker from Developmental FX! Tracy and Mouse will be speaking about core issues in fragile X syndrome with a focus on understanding and managing hyperarousal. Information shared will have application for parents and professionals across home, school and community settings throughout the lifespan.

Location

UMASS Worcester Medical School

More information will follow!

]]> http://www.fragilexma.org/events/save-the-date-tracy-mouse-are-coming-back-to-massachusetts/feed/ 1 MA residents, can you write a letter for us? http://www.fragilexma.org/events/advocacy-day/ma-residents-can-you-write-a-letter-for-us/ http://www.fragilexma.org/events/advocacy-day/ma-residents-can-you-write-a-letter-for-us/#comments Tue, 28 Feb 2012 02:17:09 +0000 Melissa http://www.fragilexma.org/?p=803 Eric & I will be leaving for Washington D.C. on Monday, March 8th in order to participate in the National Fragile X Foundation’s annual Advocacy Day event. This will be our second year attending. If anyone would like to write letters for us to deliver we would love to be able to do so. . . . » Continue reading]]> Eric & I will be leaving for Washington D.C. on Monday, March 8th in order to participate in the National Fragile X Foundation’s annual Advocacy Day event. This will be our second year attending. If anyone would like to write letters for us to deliver we would love to be able to do so. A draft letter is attached, only the first paragraph explaining your personal story is required. We need one letter for each of the MA Senators and one for your representative. There is a link included so you can look up your representative. Please let us know if you have any questions.

We need a scanned copy of the signed letter by Wednesday, February 29, 2012. If you wish to forward the original to us we will take that with us to Washington with us. You can send it to me at 63 Griswold Street, Cambridge, MA 02138

Draft FX Letter

Thanks!

 

]]> http://www.fragilexma.org/events/advocacy-day/ma-residents-can-you-write-a-letter-for-us/feed/ 0 Dr. Lenonard Abbedutto at UMASS Worcester on Thursday, February 23, 2012 http://www.fragilexma.org/events/dr-lenonard-abbedutto-at-umass-worcester-on-thursday-february-23-2012/ http://www.fragilexma.org/events/dr-lenonard-abbedutto-at-umass-worcester-on-thursday-february-23-2012/#comments Tue, 21 Feb 2012 19:12:31 +0000 Melissa http://www.fragilexma.org/?p=793 Sorry for the short notice but we just learned that Dr. Len Abbedutto, PhD, Director of the MIND Institute, UC Davis, will be presenting at UMass Department of Psychiatry Grand Rounds from 12 PM to 1 PM. Dr. Abbedutto’s topic will be “Fragile X Syndrome and Language Development: Phenotype, Variation, Mechanisms and Treatment.”

Grand . . . » Continue reading]]> Sorry for the short notice but we just learned that Dr. Len Abbedutto, PhD, Director of the MIND Institute, UC Davis, will be presenting at UMass Department of Psychiatry Grand Rounds from 12 PM to 1 PM. Dr. Abbedutto’s topic will be “Fragile X Syndrome and Language Development: Phenotype, Variation, Mechanisms and Treatment.”

Grand Rounds take place in the Lazare Auditorium (1st floor - Medical School Building, S1-607, near the library) unless otherwise indicated. Rounds are attended by faculty, residents, and professional staff and are also open to the public.

For additional information please contact Grand Rounds Coordinator – Marsha Falcone at 508-334-0578 or via email: Marsha.falcone@umassmed.edu

]]> http://www.fragilexma.org/events/dr-lenonard-abbedutto-at-umass-worcester-on-thursday-february-23-2012/feed/ 0 Study of Fragile X Treatment Preferences (earn money for the NFXF!) http://www.fragilexma.org/research/study-of-fragile-x-treatment-preferences-earn-money-for-the-nfxf/ http://www.fragilexma.org/research/study-of-fragile-x-treatment-preferences-earn-money-for-the-nfxf/#comments Wed, 11 Jan 2012 16:49:06 +0000 Melissa http://www.fragilexma.org/?p=786 Please consider taking this RTI survey, it will take approximately 20 minutes and RTI will donate $15 to the NFXF for each survey completed! It’s an easy way to help the Foundation with its mission!

Treatment Preferences for Fragile X Syndrome.

]]> Please consider taking this RTI survey, it will take approximately 20 minutes and RTI will donate $15 to the NFXF for each survey completed! It’s an easy way to help the Foundation with its mission!

Treatment Preferences for Fragile X Syndrome.

]]> http://www.fragilexma.org/research/study-of-fragile-x-treatment-preferences-earn-money-for-the-nfxf/feed/ 0 Visiting with Santa options http://www.fragilexma.org/events/visiting-with-santa-options/ http://www.fragilexma.org/events/visiting-with-santa-options/#comments Wed, 30 Nov 2011 14:54:28 +0000 Melissa http://www.fragilexma.org/?p=776 We are aware of two sensory friendly Santa events, if you are aware of any others please let us know!

Saturday, December 10, 2011 — Lowell, MA

A Very Special Santa for “Sensory Kids”: Saturday, December 10th, 2011, 9:30 a.m. – 11 a.m., Pollard Library, 401 Merrimack Street, Lowell, MA. Children . . . » Continue reading]]> We are aware of two sensory friendly Santa events, if you are aware of any others please let us know!

Saturday, December 10, 2011 — Lowell, MA

A Very Special Santa for “Sensory Kids”: Saturday, December 10th, 2011, 9:30 a.m. – 11 a.m., Pollard Library, 401 Merrimack Street, Lowell, MA. Children on the autism spectrum and any child with sensory issues and their families are invited to visit with Santa. The lights will be low and the carols playing softly. One of Santa’s elves is on the spectrum so he has experience with special kids. This even is specifically for special-needs kids and their families, however all children and families are welcome to attend the 11 a.m. to 3 p.m. holiday events immediately following. For more information, contact Molly Hancock, Coordinator of Youth Services at 978-970-4124 or, e-mail at mhancock@mvlc.org or visit www.pollardml.org

Saturday, December 17, 2011 — North Kingston, RI

A special sitting with Santa at the North Kingstown High School (in the Cafeteria). It is $10 per family, from 1-3pm. The phone no. is 401-268-6275 if anyone needs additional information.

]]> http://www.fragilexma.org/events/visiting-with-santa-options/feed/ 2 Moms’ Night Out – December 7, 2011 http://www.fragilexma.org/events/mothers-night-out/moms-night-out-december-7-2011/ http://www.fragilexma.org/events/mothers-night-out/moms-night-out-december-7-2011/#comments Wed, 16 Nov 2011 17:33:25 +0000 Melissa http://www.fragilexma.org/?p=768 Our Moms’ Night Out event is now a monthly affair! Please keep us in mind for the first Wednesday of each month!

Our next night out is on Wednesday, December 7, 2011 at 7 PM. A few moms will be gathering, once again, at a restaurant in Framingham for dinner and laughs. If . . . » Continue reading]]>

Our Moms’ Night Out event is now a monthly affair! Please keep us in mind for the first Wednesday of each month!

Our next night out is on Wednesday, December 7, 2011 at 7 PM. A few moms will be gathering, once again, at a restaurant in Framingham for dinner and laughs. If you are interested in joining us, please shoot me an e-mail for details!

Melissa
melissa@fragilexma.org

]]> http://www.fragilexma.org/events/mothers-night-out/moms-night-out-december-7-2011/feed/ 2 Mothers’ Night Out – November 2, 2011 http://www.fragilexma.org/events/mothers-night-out-november-2-2011/ http://www.fragilexma.org/events/mothers-night-out-november-2-2011/#comments Tue, 11 Oct 2011 13:57:42 +0000 Melissa http://www.fragilexma.org/?p=753 On Wednesday, November 2, 2011 at 7 PM, a few moms will be gathering at a restaurant in Natick for dinner and laughs. If you are interested in joining us, please shoot me an e-mail for details!

Melissa melissa@fragilexma.org

]]> On Wednesday, November 2, 2011 at 7 PM, a few moms will be gathering at a restaurant in Natick for dinner and laughs. If you are interested in joining us, please shoot me an e-mail for details!

Melissa
melissa@fragilexma.org

]]> http://www.fragilexma.org/events/mothers-night-out-november-2-2011/feed/ 0 Foodies for FRAXA – Fragile X Fundraiser http://www.fragilexma.org/events/foodies-for-fraxa-fragile-x-fundraiser/ http://www.fragilexma.org/events/foodies-for-fraxa-fragile-x-fundraiser/#comments Sun, 02 Oct 2011 13:19:42 +0000 Melissa http://www.fragilexma.org/?p=743 On Sunday, October 9, 2011, The Ice House in Rye, NH will be hosting a fundraiser for FRAXA from 11 AM to 8 PM.

Location: 

The Ice House 112 Wentworth Road Rye, NH

Time:

11 AM – 8 PM

We will be attending, if you want to meet up with other . . . » Continue reading]]> On Sunday, October 9, 2011, The Ice House in Rye, NH will be hosting a fundraiser for FRAXA from 11 AM to 8 PM.

Location: 

The Ice House
112 Wentworth Road
Rye, NH

Time:

11 AM – 8 PM

We will be attending, if you want to meet up with other families let us know when you’re planning to go.

]]> http://www.fragilexma.org/events/foodies-for-fraxa-fragile-x-fundraiser/feed/ 1 Wrightslaw Seminar in Leominster, MA http://www.fragilexma.org/events/wrightslaw-seminar-in-leominster-ma/ http://www.fragilexma.org/events/wrightslaw-seminar-in-leominster-ma/#comments Wed, 28 Sep 2011 14:11:33 +0000 Melissa http://www.fragilexma.org/?p=737 This is not precisely Fragile X related but for any parents of school aged kids who could use some help with IEPs these seminars are reportedly incredibly good. The seminar is scheduled from 9 – 4 on Thursday, October 27, 2011.

One-day special education law and advocacy programs focus on four areas:

special education . . . » Continue reading]]> This is not precisely Fragile X related but for any parents of school aged kids who could use some help with IEPs these seminars are reportedly incredibly good. The seminar is scheduled from 9 – 4 on Thursday, October 27, 2011.

One-day special education law and advocacy programs focus on four areas:

  • special education law, rights and responsibilities
  • tests and measurements to measure progress & regression
  • SMART IEPs
  • introduction to tactics & strategies for effective advocacy

Wrightslaw programs are designed to meet the needs of parents, educators, health care providers, advocates and attorneys who represent children with disabilities regarding special education.

I will be attending this year, let me know if you’re interested in having dinner afterwards.

See the details here: Thursday, October 27, 2011

]]> http://www.fragilexma.org/events/wrightslaw-seminar-in-leominster-ma/feed/ 0