PO Box 14185
PGH PA 15239
NF Stories
Do you live with NF? Do you know someone with NF?
Building on last year’s excellent initiative led by NF Inc. California, the NFCA is proud to introduce NF Stories, your own Story Page on the NFCA Website, www.nfpittsburgh.org, linking us together with your own words, your own photos and pictures, your own stories. It’s easy! You just send an email with your story, or poem, or photo, and consent form to the NFCA staffwriters at info@nfpittsburgh.org. We do the rest. Please help the NFCA to encourage others by sharing your NF Stories of encouragement!
Debbi and Emily on Capitol Hill
Howdy Gang
I just wanted to share with you my experience here on the Hill the past 2 days. I brought Emily and we have been to the office of 15 Congressmen and 5 Senators in the past 48 hrs and we are really pleased with the response!
They are all so wonderful in making time to really listen to who you all are and what our needs are. I have reconnected with a handful of people from last year who have assured me that they are definately signing the funding letter this year we have requested 20 million dollars. And I have also met some new Congressmen and they are very interested in helping us achieve our funding goals.
The bottom line is it looks to be a promising year for NF research funding! Our letter writing campaign this year ought to be easier. I am so glad to be here on behalf of Michigan. It really does work to establish a friendship with our legislature, it puts a face to a disease. I take your names and stories and share them with our Congresspeople and Senators.
I brought Daniel’s story from the paper and shared pictures of his success. I shared the achievement of Mikaela’s first skiing adventure. I shared the challenges of Shelley and Scott’s difficult decisions re: Austin’s upcoming surgery. I shared that Reagan is participating in an NIH project and how grateful we are to have scientists interested in helping our kids. I shared that Jessica traveled to Ann Arbor for medical attention and has recovered wonderfully. I spoke how Dave and others raise money through a golf outing to give to those who need to travel for medical attention.
You are all an amazing group of people. You have all been with me on my trip and because of your stories our government will continue to support funding NF research.
Get ready to do some letter writing but know that these people feel connected to you and are on your side.
Much love,
Deb and Emily Hanlon
Poem for The Poor
When you’re down and sad, I’ll tell you a joke that’s funny
I’ll give you a tissue when your nose is red and runny
I know you may not be wealthy, but still I know your kind
And I will help you anyway I can think of in my mind
You sit there through the night, with your face full of fright
The stars are a beautiful sight and the only form of light
Don’t sit there begging for money
Be a street comedian if you’re funny
But most important don’t be desperate and blue,
the world still has a place for you
Jazz entered a world wide student contest for an opportunity to be published in the Anthology of Poetry by Young Americans 2006 Edition. This poem was published on page 9. Great and compassionate work, Jazz. Congratulations!
My Daughter Jazz’s NF
Many people in the world never heard of Neurofibromatosis
Today and forever you will have some knowledge of it
Vital information is always helpful and I aim to please
There’s another name for it called von Recklinghausen disease
Other chronic illness we focus on gets very hectic
Jazz’s condition slips through the crack, it’s also genetic
We are dealing with keeping stress out and finding time for humor
It’s always serious worrying about the growth of a tumor
When this happens it jeopardize the nerve cells
But before it can I pray to God he never fails
She don’t like MRI’s or seeing a neurosurgeon but she does her part
A sign of Nf is spots on her body looking like birthmarks
My diabetes along with her situation, one thing is very true
There are two diagnosed types NF1 and NF2
We go through life saying “Hope it never happens to me”
The affect of 1 out of 3,000 is substantial emotionally
It’s close to my heart and now I’ll speak
Her circumstance is right there under the cheek
I will do my best being an advocate that’s for sure
They’re doing research but for NF there’s no cure
Now reality has sat in, this is a unwanted ordeal
If you’re not going through this don’t say “I understand how you feel”
God has always blessed us he hasn’t missed
As a matter of fact we went to Disneyland thanks to Make A Wish