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Hi! Welcome to the Missouri Chapter!  Want to be part of our mailing list? Looking for more information? Want to host your own event? 

We welcome everyone to become more involved in spreading public awareness, patient education and fundraising.

Contact Amita at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

On Facebook?  Connect with us!

Young Professional Group Forming

The Missouri CTF Chapter is forming a Young Professional (YP) Group for individuals in the 18-26 age range.  The goal of the YP group will be to raise funds and increase public awareness of NF, and to provide opportunities for the YP’ers to connect with the youth and host events for the youth of the Chapter.  Potential events may include college concerts, wine tasting/auction, progressive dinner parties, mixers, etc.  Please contact Ashley Meyer at (314) 583-2365 or (636) 861-2365 for more information.

UPCOMING EVENTS:

Check back soon!

PAST EVENTS:

If you missed NF inc's NF2 webinar with Dr. Scott Plotkin, you can still watch it here!

http://nfnetwork.org/blog/view/nf2-webinar-with-scott-plotkin-md/

Trivia Night & Silent Auction

Join us for a fun-filled night of trivia with an exciting silent auction to benefit neurofibromatosis research presented by Team Lydia.
 

Date: Saturday, November 26, 2011

Time: 7:00pm-10:00pm

Silent Auction begins at 6:00

Location: Coulterville VFW in Coulterville, Illinois
                  VFW Post 6865
                  511 VFW Street
                  Coulterville, IL 62237

                  618-758-9009

$CASH PRIZES!!! $

Table Cost: $80
Each team should consist of 6-8 players
Please bring your own snacks
Beverages must be purchased at the bar
Tables are limited! Fore more information, please contact Daralynn Gross at (618)329-5291 or Tonya Thompson at (618) 329-5369 

Join us as we take steps to end NF! There will be food, games, and fun for the whole family.  Dogs on leashes are also encouraged to join!

Location: Clydesdale Park

                  9801 Green Park Rd 

The 2011 Neurofibromatosis Symposium-Presented by NF Midwest

 
Date:         Saturday, October 15, 2011

Time:         8:00 AM to 4:00 PM

Location:  Renaissance St. Louis Airport Hotel
                   St. Louis, Missouri


Join NF Midwest for an exciting day in which you will meet other families dealing with NF and hear specialists tell us
about the latest progress in NF research, current treatment options, and practical advice for living with NF.


Please check out www.nfmidwest.org/symposium2011 for more information.

Paper Dolls Fashion Show

Come and enjoy a night of fashion and fundraising!

Date:  Friday, July 29, 2011

Time: 6 pm- Happy Hour

           7 pm- Fashion Show

           8 pm-Silent Auction

Location: Kirkwood Station Plaza

                  Kirkwood Road and Argonne

                  Kirkwood, MO

Admission is free!

Celebrity Karaoke

Family Picnic and  NF Walk

Date: Saturday, October 2, 2010

Location: Tilles Park. Litzsinger Road; St. Louis, MO 63124

                  ADA accessible

1 Mile Fitness Trail NF Walk to begin at 11 a.m. Join in and raise awareness and funds for NF. T-shirts and help with on-line fundraising needs will be provided.  Contact (314) 853-8335 to RSVP.  Each family is responsible for their own meals.  Facilities include 1 stone BBQ pit, electricity, water, playground within 40 ft., lake nearby to fish.  Ballpark close.

To register for the NF Walk click here

To become a fundraiser or donate to the NF Walk click here

Children’s Tumor Foundation 1-Mile Walk and Family Picnic

Join us for a 1-mile “Walk for NF” on Saturday, October 2^nd at the Skow Shelter at Tilles Park at 10:00 a.m.  A family picnic will follow, featuring pumpkin decorating, face painting and games for the kids. 

Admission to the event will be free, donations will be accepted.  

Location:  Tilles Park; Skow Shelter
9551 Litzsinger Road
Ladue, MO

Date & Time: Saturday, October 2^nd at 10:00 a.m.

Contact: For more information please contact: Patricia Hurstat This e-mail address is being protected from spambots. You need JavaScript enabled to view it   or  314-853-8335. 

"Have you ever wanted to meet a Star Wars Clone Trooper, or the notorious Bounty Hunter Cad Bane from Star Wars “The Clone Wars” ... here's your chance!  Lucasfilm's preferred Star Wars costuming organization, the 501st Legion, will be on hand for photo opportunities as they help to raise awareness of neurofibromatosis, or NF."

Porsche Car Show benefiting the Children's Tumor Foundation

October 17th
11 AM - 3 PM at KempAuto Museum in Chesterfield.  http://www.kempautomuseum.org/index.php

60 of the states finest Porsches.
Come out and support the St. Louis PCA and the Children's Tumor Foundation.
Food and drink available as well as discounted admission to the Museum

Contact Patti Hurst for more information.

Click here to view poster

NF and Physical Therapy:  Maximizing Potential through Therapeutic Interventions

Tuesday, November 16th – 7:00 pm, St. Louis Children’s Hospital, Room PL 27

Presented by:  Physical Therapist, Courtney Dunn

Please join us as Courtney Dunn, Physical Therapist, provides an overview of gross and fine motor delays that may be present in children with NF and shares options that are available to address these delays.  There will also be information available on community resources and books that may be helpful to families to be strong advocates for their children in schools in relation to therapy services.  Ms. Dunn is part of the NF Team at the Comprehensive NF Center at Washington University St. Louis Children’s Hospital.



To join our mailing list, please email This e-mail address is being protected from spambots. You need JavaScript enabled to view it .


Stay tuned for upcoming events in the Spring of 2011…

Bullying –Information for Parents, Image and Esteem, NF Endurance Team Event


These educational sessions would not be possible without the generous support of our local NF Clinics.  Many thanks to:

Pediatric Neurofibromatosis Clinic                                               
SSM Cardinal Glennon Children’s Medical Center                     
(314) 577-5397                                                                                   

Comprehensive NF Center
Washington University St. Louis Children’s Hospital
(314) 454-KIDS

Paper Dolls and Courtney Gene present a Fall Fashion Show
Proceeds to the Children's Tumor Foundation!
July 30th
5:00 PM
Kirkwood Station Plaza

To view the poster, click here

GO! St. Louis Marathon & Family Fitness Weekend

April 10 and 11, 2010

Runners and Walkers Needed

Saturday, April 10

Steve and Stefanie Granberg

NF Endurance Team

Missouri Volunteer Team Captains

(314) 849-7244

This e-mail address is being protected from spambots. You need JavaScript enabled to view it

St. Louis’ St. Patrick’s Day Parade March 13, 2010

The St. Louis Region of the Porsche Club of America invited the Missouri Chapter of the Children’s Tumor Foundation to participate with them in the St. Patrick’s Day Parade on March 13, 2010.  Lily Branson (11), Sarah Branson (7), and Isaac Branson (4), along with Ryan Quinn (11) and Shannon Quinn (7) enjoyed playing with a few colorfully clad clowns who paused long enough to pose for a picture.  During the parade, the children enjoyed waiving to the huge crowds from their comfortable perch within the beautiful, classy Porsches they were riding in.  The kids had a great time, but admitted all that waiving was hard work!!   St.Louis’ St. Patrick’s Day Parade is one of the top five in the country with over 250,000 spectators, comprised on over 120 units, including marching bands, floats, huge cartoon character baloons, 5,000 marchers, lots of clowns and of course, Porsches ~~

R4R Party

The R4R party, held at Jilly’s Café on January 30th, was a great success!  Over sixty people turned out to cheer on the Children's Tumor Foundation Porsche GT3 Cup car during the live telelcast of the Rolex 24 Hours at Daytona on the Fox Sports and Speed Channel.  It was a great opportunity for CTF friends and families to mingle with our friends from the St. Louis Region of the Porsche Club, co-sponsors of the event.   100% of donations raised went toward funding the Children’s Tumor Foundation's Drug Discovery initiative (DDI).