Give Hope...it's in our genes.

World RARE Disease Day
Blog Hop

To all my Amazing, Sweet Friends who have followed me along my path

these last few years, I want to Thank You with all my Heart

for your wisdom & kindness & generosity of Spirit.

You have made ALL the difference in helping free me to speak my truths

without fear, knowing I would land in a place of love & support...

there aren't even words that can express a gift like that.

I learned about Huntington's Disease when I was 10 years old.

My Mother who was adopted, had been sick for quite a while by then.

 Her doctors were finding it difficult to come up with a diagnosis for

her condition without having more information about her birth family.

It was during this period that I heard the term, Huntington's Chorea, for the very first time.

How could I have ever known, how much those 2 words

would change mine & my family's life forever.

{Read more about my journey HERE}

Huntington's Disease is neurodegenerative genetic disorder.

The onset of HD is generally in the prime of your life...

there is no cure & it is fatal.

My Mother & Brother both died from complications of Huntington's.

Every child of an affected person has a 50% chance of inheriting this disease.

This has been a lifelong heartbreak for for me & my loved ones...

but I STILL have HOPE! 

{Susie & Johnny last Christmas}

The Good News!!!

I am joining with The Global Gene Project to help promote awareness for the

upcoming World Rare Disease Day on February 29th, 2012.

What does the R.A.R.E. Project stand for??

Rare Disease / Advocacy / Research / Education

Statistics

*30 days from now is World Rare Disease Day.

*Why is the number 30 significant?

*30% of children with RARE disease will die by their 5th birthday.

*An estimated 350 million people are affected by rare disease worldwide.

*1 in 10 Americans is affected by rare disease, that's over 30 million people.

*30 million Americans is more than the total number of people

  living worldwide with cancer & aids.

*There are more than 7,000 rare diseases with some affecting less than 100 people.

*75% of rare disease affect children,

*Almost 80% of rare disease are genetic in origin.

*These rare conditions are chronic, life threatening and FATAL.

*There are NO cures for any rare disease, and only 5% of the diseases have any treatment.

*Over 50% of Rare Diseases have no foundations, advocacy group or community support.

{Sara & Johnny}

Take Action

*Help unite 1 Million for RARE on the Global Genes Project Facebook page so we

  can increase awareness to the rare disease community

*Wear That You Care using JEANS to call attention to GENES that can cause rare
  disease on World Rare Disease Day, February 29th & encourage others to do so too.

  Include your schools, sports teams, places of worship, family & coworkers!

  Share your photos on Facebook, tag Global Genes Project!

*Getting involved can be as simple as putting on a pair of jeans or as involved as organizing a local

  Denim & Genes event.

Recently driving home, I saw the most beautiful, crystal clear rainbow
that I've ever seen & instantly knew it was a SIGN.

A sign of all the wonderful things to come,
a sign of Joy & Peace & Love for the New Year,
but most importantly & without reservation, I knew
it was a sign of HOPE.
Life without hope is no life at all.
GIVE HOPE...it's in our GENES!

XOXO

vintagesusie