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