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        McKaila  Steffes  Memorial  NF  St.  Patrick’s  Day  Parade  

 All  Family  and  Friends  Welcome!  

Join  Us  behind  the  CTF  Banner  in  this    Annual  Denver  LoDo  Event  

 

Saturday,  March  12th  @  10am  Remember  to  bring  candy  for  the  parade    

Lunch:  As  a  tradition  in  past  years,  families  have  gathered  at  La  Loma  Mexican  Restaurant  at  2527  W.  26th  Ave  after  the  parade.  

Seating  is  limited,  so  please  RSVP  by  March  5th      

T-­‐Shirts  Available  for  Purchase  $10  in  all  sizes  Youth  sizes:  M  &  L  also  Adult  sizes:  M  &  L  &  XL  

 

RSVP  &  T-­‐Shirts:  Shelley  Pesta  Phone:  (303)  770-­‐7791  

Email:  shelleypesta@yahoo.com  

JAKE SENSENBAUGH

DO IT FOR JAKE! Together We Can Make A Difference… Please visit Jake online at www.doitforjake.com   to find out how you can help and make a difference for Jake.  

Go Jakester!

Colorado  Chapter  PO  Box  101357  

Denver,  CO    80250-­‐1357  Phone:  (303)  460-­‐8313  

 President:  Mark  Ebel  mark.ebel@eyeris.com  

mark.ebel@alumni.duke.edu  (303)  734-­‐9942  

 Secretary:  Shelley  Pesta  shelleypesta@yahoo.com    

(303)  770-­‐0552    

Treasurer:  Eric  Cahn  kevinbcahn@aol.com    

(303)  322-­‐4194    

OUTREACH  CONTACTS:  Denver:  Jane  Cahn  

janecdenver@aol.com  (303)  322-­‐4194  

 Colorado  Springs:  Dana  Stanley  

danaapril@aol.com  (719)  574-­‐1754  

 Grand  Junction:  Cathy  Green  

cg79@aol.com  (970)  257-­‐1260  

 Monte  Vista:  Susan  Carroll  

sunsetdreams_03@hotmail.com  (719)  852-­‐3114  

 Colorado  NF  Information  Line  

(303)  460-­‐8313    

NF  Clinic  at  Children’s  Hospital  (303)  724-­‐2370  

 Adult  Genetics  Clinic  at    University  Hospital    (303)  493-­‐8333  

 Children’s  Tumor  Foundation:  www.ctf.org  (800)  323-­‐7938  

Spring  2011  The  Children's  Tumor  Foundation  is  a  non  profit  501(c)  (3)  medical  foundation,  dedicated  to  

improving  the  health  and  well  being  of  individuals  and  families  affected  by  the  neurofibromatoses  (NF).  

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The  President’s  Letter  Mark  Ebel,  CTF  Colorado  Chapter  President  

 2011  NF  Research  Funding  

 In  late  December,  Congress  passed  a  continuing   resolution   related   to   the  2011   budget   that   included   $13.75  Million   for   NF   research   through   the  CDMRP-­‐NFRP   program   (the   same  amount   that   was   included   in   the  2010   budget).     This  was   deemed   to  

be   a   very   positive   development  given   the   current   emphasis   in  Washington   on   finding   ways   to   cut  federal   spending.     In   early   January  however,  the  new  Congress  decided  to  put  a  hold  on  this  funding,  and  we  still  don’t  know  when  or   if   the  2011  CDMRP   funding  will   be   finalized.       I  want   to   remind   everyone   of   the  

significance   of   this   funding   for  ongoing   NF   research   programs,   and  the   importance   of   all   of   your  individual  efforts  to  contact  Senators  and   Representatives   in   support   of  this   program.     We   will   keep   our  fingers   crossed   that   the   2011  funding  for  NF  research  is  left  intact!  

   

University  of  Colorado  JFK  Partners  and  Children’s  Hospital  Translational  Neuroscience  Nexus    

for  the  Study  of  Intellectual    and  Developmental  Disabilities  (COMIRB  #  08-­‐1276;  Date:    11/30/09;  Version  #2.0)  

   Learn  more  about  the  Nexus Registry and Biobank.  This  is  the  first  registry  in  the  nation  that  combines  clinical  information  with  biological   samples   to  help   research  developmental   and   intellectual   disabilities.     It   is   our  hope   that   through   this   effort,  we’ll  be  able   to  greatly  accelerate  our  understanding  of   intellectual  and  developmental  disabilities  and  by  doing  so  develop  better  diagnosis  and  treatment  protocols.    

Contact  person:    Sondra  Rosendahl  (Rosendahl.Sondra@tchden.org),  303-­‐724-­‐2349    

6th  Annual  NF  Gingerbread  House  Event  The   6th   annual   Gingerbread   House  event   was   a   feel-­‐good   event   all  around.   As   holiday   music   filled   the  air,  25  gingerbread  houses  were  iced  and   decorated,   fistfuls   of   candy  were   devoured   by   children   (&  adults!),  families  exchanged  updates  and   news,   and   newborn   Aiden  Medvidofsky   made   his   debut   at   a  CTF   event.   We   even   decorated   a  house   to   deliver   to   our   dear   friend,  Jake   Sensenbaugh,   who   could   not  attend   the   event   this   year.   At   the  end  of   the  day,  we  also  donated   all  the   leftover   candy   to   a   1st   grade  teacher  attending   the   festivities,   for  the   children   at   her   low-­‐income  school   to   use   during   their   own  gingerbread  house  decorating  event.  Fun,  festive  events  like  these  help  to  build  the  strong  sense  of  community  in  our  chapter!  

 

Hosted  by:    Catherine  Laskey  &  Mark  Ebel

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CTF  International  NF  Summer  Camp  

 Young  Adults,  ages  12-­‐21  

 July  16-­‐22  New  Camp  

July  23-­‐29  Reunion  Camp    

Location:  Utah  Cost:  $650  plus  airfare  –  Scholarships  Available    

Website:  www.ctf.org/camp    

Contact:  Patrice  Pancza  Phone:  (800)  323-­‐2938,  ext  235  

Email:  ppancza@ctf.org    

Texas  Annual  NF  Family  Camp  

 

September  9-­‐11,  2011      

Location:  Burton,  Texas  (Central  Texas  Camp  for  All)  

 Cost:  $100  plus  transportation  Website:  www.texasnf.org    And:  www.  Campforall.org    

 Contact:  Cindy  Hahn  Phone:  (800)  942-­‐8476  

Email:  chahn@texasnf.org      

Adams  Camp    

Family  and  Independent  Camps  Available  for  Toddlers  through  Teens  

 

Dates:  Multiple  Sessions    

Location:  Snow  Mountain  Ranch  Granby,  Colorado  

 Website:  www.adamscamp.org    

Phone:  (303)  563-­‐8290  Email:  contact@adamcamp.org    

 Address:  5251  South  Quebec  Street;  Suite  150  

Greenwood  Village,  Colorado  80111    

The  Colorado  Junior  Wheelchair  

Sports  Camp    

Day  Camp  Only  for  Grades  1-­‐12    

Date:  Early  June  Expect  Actual  Date  to  be  set  in  April  

 Location:  Metro  Denver  Area  

Cost:  No  Charge    

Contact:  Beth  Sensenbaugh  Phone:  (303)  452-­‐6743  

Email:  ducknrun@comcast.net      

ANNUAL  CAMPAIGN,  SPECIAL  EVENTS,  &  DONORS  9/15/10  –  12/31/10  

 $25  -­‐  $49   Dana  Stanley  $100  -­‐  $199   Byron  &  Phyllis  Beaty       Denise  &  Levine  Ortiz       Ben  &  June  Wood         (in  honor  of  Dr.  Eva  Sujansky)  $200  -­‐  $250   Patti  Davis  (in  honor  of  Kevin  Cahn)       Joan  Gonzales       IBM  $850     Family  &  Friends  of  Jake  Sensenbaugh  $2,000     Maureen  &  Jerry  Hunter  $2,500     Newmount  Mining  $4,000     Family  &  Friends  of  Davis  Ebel  $5,000     Kara  &  Scott  Miller    Thank   you   to   everyone  who  made   contributions   directly  to  CTF  National,    marathons,  or  Denver  &  Loveland  Walks.  Please  remember  “COLORADO  CHAPTER”  when  donating.

FISCAL    YEAR    END    REPORT  The  Colorado  CTF  Chapter’s  Fiscal  Year  Ended  12/31/10  Information  on  Income  and  Expenses  for  the  Chapter:  

 Income:  Fundraiser  &  Individual  Contributions                                  $24,938.39  Corporations                                                                                                                                  1,203.74                                                                                                                                                    United  Way/Community  Health  Charities                              3,168.55  Special  Events                                                                                                                          34,939.51  Total:                                                                                                                                                    $64,250.19    Expenses:  (see  note)                                                                                                $14,065.82                                                                                                                                                                                              Net:                                                                                                                                                          $50,184.37    Note:   The   expenses   include   Printing,   Postage   and  Shipping,   Newsletter,   Telephone,   Office   and   Other  Supplies,   Support   Groups,   Travel,   Professional   Fees,  Meeting  expenses,  Food  and  Beverage,  Special  Events  and  Miscellaneous  Expenses.  

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     Children’s  Tumor  Foundation        Colorado  Chapter        PO  Box  101357        Denver,  CO  80250-­‐1357    

     RETURN  SERVICE  REQUESTED  

NON-PROFIT ORG. U.S. Postage

PAID Golden, CO

Permit No. 5323

McKaila  Steffes  Memorial  NF  St.  Patrick’s  Day  Parade  

All  Family  and  Friends  Welcome!  Join  Us  behind  the  CTF  Banner  in  this    

Annual  Denver  LoDo  Event  

Saturday,  March  12th  @  10am  Specifics  on  Meeting  Location  via  email  only!  

Please  provide  current  email  address  if  you  are  not  currently  receiving  Chapter  updates  via  email  

For  Additional  Information,  contact:  

Shelley  Pesta:  shelleypesta@yahoo.com    

11th  Annual  Women’s  Day  Gathering  Saturday,  April  16,  2010  9:00  a.m.  to  1:00  p.m.  

 Draper  Home  

11776  Glencoe  Street  Thornton,  Colorado  

 RSVP  by  April  8th  to:  

Brook  Draper:  (303)  452-­‐1334  or  brook.draper@adams12.org    Jane  Cahn:  (303)  322-­‐4194  or  janecdenver@aol.com  

 Box  lunches  ordered  by  request  only  

Join  us  in  the  unique  opportunity  to  listen,  learn,  and  share  

Register  at:  www.CTF.org  

 Registration  Opens  Feb  21