Kim Maska |  |
| Thank you for the support
8 July 2009 - Thorofare, New
Jersey
|
| mikaela |
|
| It's really sweet that you put this website together!!
29 May 2009
|
| Yvonne Rentschler |
|
| My 4 year old son was diagnosed w/ NF1 last year. He has
a large progressive plexiform neurofibroma growning from his C2 down
the left of his neck and into the chest cavity. No one here in KC
wants to touch him, we have been in one clinical trial for Gleevac
last year in Indy, but no luck as he would not swallow the pill.
Gleevac was way too bitter to hide in anything.we tried it all.
Hopefully soon something will help shrink this thing or he will die
due to it pushing on his airway and crocheting itself around the
carotid artery. Thanks for your site! God Bless!
20 May 2009 - Kansas
City
|
| Priyanla |
|
| Heeeyyyy!!!!!!!!!! i have been readong bou kadyn for such
a long time now. i have to say this babie has greatttt will power
and enormous strength to fight and deal with issues he had to go
through since birth. I just pray to god that kadyn has a beautiful
live ahead of him, and i am sure that he will succeed in anything he
does in live. Hey you little fighter love yaa lots n lots n
lots!!!!!! muaaaahhhhzzzzz. and may GOD bless you and your family.
And also HATS OFF to the wonderful wonderful mom and
dad!!!!!!ChEersssSsssSsssssSSSSSssss guyz!!!!!
7 April 2009 - Toronto,
Canada
|
| Shannon |
|
| Thanks everyone for all your well wishes. It really means
a lot to me.
6 April 2009 - Phoenix,
AZ
|
| rotterdamm77 | |
| Hello I like this site I will return
12 March 2009 - usa
|
| CARLOS MARCELO LORENZO |
|
| GOD BLESS YOU AND YOUR FAMILY!!!
25 January 2009 - BUENOS AIRES -
ARGENTINA
|
| Lorraine El Khouly |
|
| Hi Shannon i was so glad to see your site and happy to
see how well you are doing i also have a 12 year son with nf1 he is
also doing fine and was happy to see how well you are doing it gave
him a boost to see how happy you look you take care kind regards
Lorraine and Jermaine El Khouly.
23 January 2009 - co. Dublin
Ireland
|
| Diane | |
| All our love to you and your family on this new year
14 January 2009 - erie
pa
|
| Deb | |
| Hi Kelly, Shannon, and Family, Happy Holidays !!!! Miss
everyone !!!! Love, Deb
19 December 2008 - Shelby
Twp.
|
| Deb | |
| HAPPY BIRTHDAY, SHANNON!!!!
19 December 2008 - Shelbly
Twp.
|
| remsy |
|
 every baby born in this
world is GODs angel. kadyn is much more special. i sincerely wish
little kadyn all the wonderful things in life. be blessed!
17 December 2008 -
philippines
|
| Miriam | |
| I wish you the best, Kadyn! I hope you'll have a nice
life with much love and hope! Never, never give up! Miriam
26 October 2008 - Munich,
Germany
|
| Beth | |
| I wish you the best. I too have NF and am 32 years old
and living a great life. I'm now a highly success pharmaceutical rep
and do very well for myself. I hope this message finds you well.
Beth
11 September 2008 -
houston,tx
|
| Julie Elmquist |
|
Hey Darryl! Long time no talk! Keep running - you're an
inspiration and awesome support to the NF community. 
15 August 2008 - Ankeny
Iowa
|
| Laura Porterfield | |
| Watched the video of precious Kadyn. Want to know how
he's doing!
18 July 2008 - Hamtramck, MI
|
| Peter & Chris Dingeman | |
| He Shannon ~ Hope you are hanging in there. Pete has put
you in his most recent donation request letter for Virgiania beach
as one of his heroes. You are in our prayers and thoughts always.
Love, Pete and Chris Dingeman
19 July 2008 - Shelby Township,
MI
|
| Bill Baroner | |
 hi!! just dropping
buy to say hello! :)
11 June 2008 - Australia
|
| Rosalinda Tostado | |
| My Prayer's are with you and your family, I just seen the
you video, and I was so touch. may God keep you safe always.
7 June 2008 - Chicago
ILL
|
| DAVID | |
| HI MY NAME IS DAVID. I LIVE IN SAN ANTONIO TEXAS AND I
HAVE NF1. I AM A STUDENT AT UTSA,AND ABOUT TO GRADUATE. CAN SOMEONE
EMAIL WITH UP COMMING NF EVENTS IN THE AREA. I WANT TO WISH EVERYONE
A HOPEFULL YEAR AND THE BEST. DAVID
16 May 2008
|
| Colleen Rollins | |
| Just found your website & found it to be very
interesting. I am thinking very seriously about doing the walk in
Shelby Township, MI. My 10 yr old daughter has NF, & am hoping
she'll be able to meet new friends that have NF. ---Colleen Rollins
25 February 2008 - Au Gres,
MI
|
| deb spencer | |
| HAPPY BIRTHDAY SHANNON!!!!!!! Love, Deb
19 December 2007 - Shelby
Twp.
|
| Juliann Barnhard | |
| I have segmental schwannomatosis. I have had 3 tumors
removed from my lumbar/sacral region. The first when I was 19 and
the other 2 when I was 26. I went almost 10 years without pain. It
came back in November of 2000. Still waiting for someone to give a
damn and help me. Both of my legs/feet are going numb and I fall
frequently. I am 43 now. Could not have children because of this.
Please keep up the good work so hopefully my 7 years of pain will
not last much longer.
10 December 2007 - Clovis,
CA
|
| Sharon O'Prey |
|
| We just ran & walked (our team) the Children's Brain
Tumor William's Walk/Run today for our 2nd year. Lauren our 20 year
old was diagnosed with NF2 3 years ago and has had 2 surgeries. She
is a UGA student - Go DAWGS! Because Lauren will be 21 next year we
would like to do the NF Walk/Run in Atlanta,GA. Can you send us
information. Thanks!
3 November 2007 - Woodstock,
Georgia
|
| Glen J Hausfeld |
|
| HI, I have NF 1 and 2 because of it I have no childern. I
am almost 58 and having NF is no fun. I am not sure what to say.
Good luck to you all. so for now bye, bye Glen
1 November 2007 - Minneapolis
MN
|
| Bobbi Getch | |
| Hey NF TEAM! Saw you yesterday! RU Running tonight?
11 October 2007 - Clinton Twp. MI
|
| Lexi Sambrinos | |
 Love all the Photos.
Go NF Team!! 
11 October 2007 - Macomb,
MI
|
| IANGY SPAULDING | |
| I HAVE NF1
7 September 2007 - PALM
CITY,FL.
|
| Sally Spears | |
| My husband and 15 year old son both suffer from NF 1
31 August 2007 - Royal Palm Beach,
FL
|
| David Adams |
|
| Iam 56 had at lest 26 operations some related to my nf 1
some not.on the 31st i will again have another to removed some
tumors from my left arm.that cause numbness and thingling in my hand
and fingers, they is some nerve blockage.also i have some of the
same thing going on in my right hand. my balance isnt that good,
also the nerve results i had for my neck thr Dr. didnt like.Could i
have tumors on my spinal cord again? i had 3 small ones removed back
in 1990.i had to learn to walk all over again from that operation
which lasted for 11 hours and 3 weeks in the hospital.I hope not,if
one can help me please let me know Thank-You. (dave Adams). at
papabear72551@hotmail.com
12 August 2007 - Sumas,
Washington
|
| Kate |
| Son (6) and husband has NF1. Son just diagnosed with
optic glinom and not really suer what all this means. Had vision
test and vision is normal. Docs say that these will sometimes not
pose a problem. Anyone else hear that?
9 August 2007 - Peabody,
Ma
|
| Maria Lease | |
| My son is 5yrs. old and has some criteria of mosaic
segmental nf1. He has no learning disabilities. In fact, he is very
bright. I would like to get more infor. on this type of the disease.
Also would like info. of alturnative medicine, supplments for
suppressing and for eyes, etc. Can you help me. Thanks, Maria
7 August 2007 - Metuchen, NJ
08840
|
| Rebecca | |
| My son is 4 years old and has NF1. I was looking about
awarness and things and came across this. Im hopeing to find other
parents going thru the same thing! Email me at Jdsgirl3@yahoo.com if
you are going thru the same thing and just want to talk.
3 August 2007 - Missouri
|
| amber myers |
|
| hey i have nf1 it sucks! but i look normal and stuff i
have lots of spots.
2 August 2007 - sandsprings
ok
|
| MEILY |
| MY 21 MONTH SON WAS DIAGNOSE WITH NF1 ON DEC 15 I WANT TO
TALK TO SOME ONE WHO HAD EXPERIENCE THIS BECAUSE THIS IS NEW FOR ME
AS A NEW MOTHER
31 July 2007 - AMTERDAM
NY
|
| paula , nicole & brandon | |
| hello i just wanted to
sign your book.i am a mom of 2 kids.we all 3 have nf2.my son brandon
and i have lost our hearing from it.my daughter has a tumor on her
brain steam.i was looking up as much on nf as i could find,and found
this website.if i could have one wish in this world i think i would
wish for a cure on nf,because it has taken so much from my kids and
me and there is nothing i can do.i wish you the best shannon.always
try to wear a smile no matter.
29 July 2007 - Wise County ,
VA.
|
| Sandy Paden RN BSN CHPN |
|
| Hello from Alabama. My daughter 14 years old has NF1. I
will be in the Pheonix Rock 'n' Roll Marathon. Loved your web site.
23 July 2007 - Foley,
Alabama
|
| Faby LeColst | |
| The first Annual “Steps 2 Cure NF” run and walk will be
on September 9th, 2007 and will take place at Horn Pond in
Woburn,MA. We’d like you to consider running, walking, volunteering
or sponsoring Stephan (my Son with NF2) for this event. Donations of
juice boxes, Gatorades, cereal bars or raffle items (any kind) would
be greatly appreciated. Every little bit helps! For more information
please visit the NF INC New England area website. Thank you!
12 July 2007 - Middleton,
MA
|
| fotinorod | |
| Hi I am Lucy, I have found your website while searching
for some info at Google. Your site has helped me in a big way.
G'night
7 July 2007 - uk
|
| Lauri Fowler | |
| Hey there--looking up info on optic gliomas and found
this site. I have nf1 as do both my son (8) and my daughter (4). She
has and og and had a debulking in 8-06. One of our drs mentioned
something about sometimes the optic gliomas invalude (which means
they go away on their own). Has anyone else heard of this? No where
else have we been told this. Take care. Lauri
24 June 2007 - Rock Hill,
SC
|
| robin | |
| i have nf 1 and im
looking for a support group in my area, and maybe a doc that can
help me with the problems im having
19 June 2007 - union mo
63084
|
| pearly | |
| Dear Shannon, I too have NF but after reading your site I
feels that you are a brave person and I hope and pray that
everything goes will with you. God bless
5 June 2007 - malaysia
|
| Joyce Kurtz | |
| I have NF1 and am interested in finding a doctor familar
with Electro Desiccation in the Los Angeles, CA area. Can you help?
16 May 2007 - Los Angeles, CA
Webmaster comments response sent by email. |
| Siobain fairbanks |
|
| hello my daughhter and i have nf1 as does my dad and
sister
16 May 2007 - Australia
|
| Anne |
|
| Good Luck to all of you! I am 19. I have NF2, and
recently lost my hearing, to that. I had surgery in April, and have
been on fast recovery! I ran my first marathon in March, at ING
Georgia Marathon, with NF Marathon Team! (together, dad and I raised
over $8,000 for NF Research!) I'm hoping for lottery granted entry
for NYC Marathon! This is an awesome team! God Bless!
12 May 2007 - Atlanta,
GA
|
| Pamela | |
| Hello, I have NF1. I am a 54 year old woman who has for
many years searched in her area for a support group for NF but there
was none to be found. I pray your son is well. Thank you for this
site.
9 May 2007 - Myrtle,
Mississippi
|
| lisa barker |
|
| everyone should help to make nf more known my cousin has
nf he is 16 and were doing a sponsored 26 mile walk this year
3 May 2007 - doncaster
england
|
| Jill Schroeder |
|
| My grandson,Kadyn David Hogg was diagnosed with NF1 at 3
months. He is now 2 years old. Last week he began his first session
of chemo for optic tumors. He will have chemo once a week for about
a year. He is doing so well with no side effects. He only weighs
26lbs so you can imagine how cute he is. I told his older brother,
Dylan that Kadyn goes to the hospital to have angel dust put into
his booboo on his chest. I am proud to be this little angel's nana.
Love to all, Kadyn's nana
3 May 2007 - Greensburg,
Indiana
|
| Patricia S. |
| My daughter Alyson was diagnosed with NF1 approx. 6
months ago. It took 15 months for the genitic results to come in. In
her 2 year life span she has consulted more specialists than I can
count, had open heart surgery to repair defects and faces another
surgery in the future. Today we got the results of her first CT
scan, 3 dark spots, the largest just behind the optic nerve ( the
size of a mans thumbnail). I don't know how worried to be, there
seems to be none in our area that understands what all this means.
2 May 2007 - Ontario,
Canada
|
| Nic | |
| Hey! It's a fellow NF Runner across the pond in
Wisconsin. I LOVE the website, and want to set one up for Team
Wisconsin! It's wonderful, this team!
19 April 2007 - Plymouth,
WI
|
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