Saturday, February 28, 2015

Rare Disease Day 2015

According to Wikipenia, a rare disease, also referred to as an orphan disease, is any disease that affects a small percentage of the population. There is no single, widely accepted definition for rare diseases. Some definitions rely solely on the number of people living with a disease, and other definitions include other factors, such as the existence of adequate treatments or the severity of the disease. In the United States, the Rare Disease Act of 2002 defines rare disease strictly according to prevalence (number of people living with a disease at a given moment), specifically "any disease or condition that affects less than 200,000 people in the United States, or about 1 in 1, 500 people. This definition is essentially like that of the Orphan Drug Act of 1983, a federal law that was written to encourage research into rare diseases and possible cures. The Global Genes Project estimates some 300 million people worldwide are affected by a rare disease.

One way to explain the difference between a common and a rare disease is using the analogy of a car. If a car has a broken windshield wiper or mirror, you can still drive it. For most people, these are common diseases, your body still works right. However, if you have a leak in your engine, it's a much bigger problem, your body does not work right. Many children with rare disease have a defect in critical genes. These are critical processes in the body that are not functioning properly.
Thank you all for supporting our family and all the others with rare diseases.

One of my wonderful co-workers
Just the Girls of Troop 775
The beginning of World Rare Disease Day, Saturday, February 28, 2015. 
The Buffalo from Cabin Camping with Girl Scout Troop 775
Cuz...showing support
A Retired Co-Worker
Another one showing support
The Daddy of the cousin's above showing support, could not put the phone down.
One more cousin showing support for Rare Disease
And the beautiful Mommy cousin showing support before getting the kids off to school and herself off to work. XOXOXO to all the Sherman's.
Becca with one of her teachers, Mrs. M....thank you for all your support....thank you to all the teachers who have supported us over the years.
Friends for of Becca's teachers as well this year. 
One of my sorority me some Tri Sigma's.....Sigma Love and Mine...
Our wonderful friend, Jami....thanks for being a part of our village.
Thanks to Managing Multiples class 12+ years ago for bringing us together....your support Sandra has always been there...xoxoxo my friend.
Thanks Ezra for all your checking in and support.
Thanks Stevie and Michelle...and for getting the little one in as well.....
Thanks little one....mommy and daddy did a great job getting you well as did Aunt Jodi.
Bar Mitzvah boy taking a few minutes out of his day to support rare diseases.
Bat Mitzvah girl taking a few minutes out of her day to support rare diseases...thanks to you and your brother.
Our friend Jodi's mom...thanks.
Thanks Val...enjoy the day and the party.
Thanks Jodi....for all support and being there....way to go on getting everyone to wear ribbons today.

Thanks Erika....all the support and weekly visits are great....
Our 1st school speech therapists....Mrs. G...I remember her putting Ian in the corner and telling him to yell at her so she could hear him...
Girl Scout love and support!
A friend from Camp Milldale days and reunited with Becca at Franklin Middle.

The support from the mom of the reunited friend!

Friends since dance days when the girls were 3!

Friends with Brian since he was a baby, thanks for all your support Jen.
Aunt Susan showing her love and support ... Always our love!
Our friend Leslie and one of her children.

Aunt Lisa, all the way from Flordia. 
Is it Karen or Mrs. F....depends on of we are in school or at our house.

Erica and her beautiful daughter...thanks to big sister Jenn.
More Girl Scout support and love...
Jill supporting her undiagnosed daughter and Ian!
Friends from high school, reunited through Facebook and at our reunion.
Friends of our friend Jodi, thanks Allison and Phillip

Mommy with the man of the day....thank you all for supporting him and all the others in the world who have rare diseases. Jeans for genes.
Heather and Marty...we love you!
Connie wearing jeans ....thanks my friend.

Karen's nieces showing their support.  
A friend of both kids, love how the kids got involved as well.
He comes to visit Ian every few months...thanks, Jake.
A past co-worker...showing her support.

A friend from high school, having her whole family wear ribbons..thanks guys.
One of our wonderful Chai Lifeline friends....XOXOXO

Another sorority sister and her family wearing jeans. 
An old cub scout and girl scout showing their support.
More Chai Lifeline friends.
Ian's 4 year-old teacher....still comes to spend time with him and now one of my closets friends.
One of my friends from college Dad and niece. Thanks for wearing jeans. 
One of our wonderful volunteers...can you tell she knows Ian well.
 Ian's girlfriends mom...thanks Jessica. My other daughter....Stephanie....we love you.
 Denise, all the way from Texas showing her support. XOXO we miss you.

 One of my co-workers....
 Another sorority sister and her family... Aunt Ali, Uncle Jeff and Jilly....
 Daddy and Becca wearing their ribbons around the house all day.
 Another Chai Lifeline friend....
Thanks Aunt Jill and Uncle David, we love you.
 My friend Sharri and her daughter. Thanks for showing your support. 
 More girl scout love coming our way.
 Love my sorority sisters....thanks....
 Our wonderful neighbors....

A huge shout out to everyone who supported Rare Disease Day....THANK YOU.

Remember to treasure yesterday, dream of tomorrow  but live for today. 

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