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NF Smarty Pants

A collection of the latest news, events, and information about Neurofibromatosis

Archive for the ‘Support’ Category

AmTrykes, Bicycles for Mobility Challenged Riders

Sunday, December 5th, 2010

AmTrykes are modified bicycles from AMBUCS, an organization dedicated to creating mobility and independence for people with disabilities. This December, they are soliciting donations to provide free AmTrykes to over 450 people on their wish list.

Silas Martin of Decatur, Illinois, received one of these vehicles.

Support Group Forms in Victoria, Australia

Wednesday, December 1st, 2010

The Hay Family is starting a support group in the city of Bendigo in Australia. This is reportedly the first NF support group for the Victoria area of the country.

Their first gathering is a picnic on December 12. Contact information is available at the end of the linked news story.

Parents Advising Parents

Tuesday, September 29th, 2009

The Cape Cod Times features an article about the lessons to be learned from parents of children with chronic illnesses.

Team Izzy of Michigan

Tuesday, September 15th, 2009

Team Izzy organized as a way to support each other, raise funds for NF research, and increase NF awareness. The group is named after 3-year-old Isobelle Mick. The Kalamazoo Gazette has a nice story on the family and their efforts.

Zoe’s Place (UK) Helps Out Family

Thursday, July 2nd, 2009

The Summers-Mannion family of Teesside, England credits Zoe’s Place, a baby hospice facility, with helping them through the difficulties of caring for a son with NF. The Gazette has their story.

June 6: Life After Diagnosis Conference (Boston)

Sunday, May 31st, 2009

This is a program intended for parents with children who have been diagnosed. Registration is required.

Check out Zoe’s Best Friend for details.

Feb 7: Illinois NF and NF2 Groups Meeting

Thursday, February 5th, 2009

The Midwest chapter of NF, Inc. is holding two planning meetings this Saturday.

NF Action Group (NAG)
10:00 aAM

NF2 Action Committee
12:00 PM

Location: NF, Inc. Midwest’s office
145 S Main
Lombard

Dec 6: Michigan Support Group Christmas Party

Wednesday, December 3rd, 2008

December 6 at 2:00 in Hudsonville, MI. Contact the Support Group of West Michigan for more information.

Wanted: Parents for Informal Discussion Group (NF Midwest)

Monday, September 29th, 2008

NF, Inc. Midwest is looking for parent volunteers to provide feedback on how to improve and increase the organization’s services. To help, please call their office at (630) 932-8111 or send an email to info@nfmidwest.org.

LA NF Support and Action Group

Saturday, September 20th, 2008

The NF Action Group for LA
Time: 6:30-8PM
Place: Northridge Hospital
18300 Roscoe Blvd.
Northridge, CA 91328

Remaining meeting dates: 9/22, 10/20, 11/17, 12/15

Agenda:

  • Sept. – Meet n Greet. Walk Recap and Plan Fall NF Awareness Day.
  • Oct. – Meet n Greet. Kick off Recycling Campaign.
  • Nov. – Meet n Greet. Set date for the end of the year Fundraising Dinner. Part of dinner profits to NF.
  • Dec. – Pot Luck, Guest Speaker, Develop Goals for 2009.