World RARE Disease Day is an annual observance held on the last day of February. On Tuesday, February 28th, many from our village wore jeans for genes to raise awareness for rare diseases and improve access to treatments and medical representation for individuals with rare diseases and their families. According to the Global Genes website, there are approximately 7,000 different types of rare diseases and disorder and 30 million people in the United States (10% of the U.S. Population) are living with a rare disease. In the United States, a condition is considered “rare” if it affects fewer than 200,000 persons combined in a particular rare disease group. Approximately 50% of the people affected by rare disease are children. Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.
Living with a family member with a rare disease can be rewarding and challenging at the same time. My son, Ian, was one of 50% of children affected with a rare disease. You become the person with the most knowledge on the disease, more than any doctor. You become the person breaking grounds for others to follow. You become the one who knows when calling the doctor, you will most likely be the one who comes up with the treatments plan. All of those becomes were rewarding and challenging at the same time. There is no support group for Ian’s disease, he is 1 of 6 known cases. Throughout the years, we gotten support from family, friends, Chai Lifeline and Gilchrist for Kids, and continue to get support from since Ian's passing. Having these groups have been a blessing, yet I wonder what it would be like to have a specific foundation for support or research.
Check out https://globalgenes.org/ to learn more about rare diseases.
We continue to be grateful for all of those who support us. Knowing that Ian will always be remembered is just one of the many ways we continue to get through our days. We continue to have ok days, bad days, and horrible days. I am not sure if the good days have come yet so for now we take the ok days when they come. We know that Ian would want us to continue living and that we are trying our best to do. I have learned there is no way to fix this so I just move forward trying to embrace it as best as I can. Rare disease day is every day for us...thank you all for wearing "Jeans" for genes to raise awareness for rare diseases.
|Jenn Orlando - For Ian 💙|
|Alyssa Fraizer - Wearing jeans to for rare disease day 2017!!!! Miss your smile Ian!!!!!|
|Beth and Bree Hackerman - Rare Disease Awareness Day!!! WE CARE!!|
|Michelle Bar'av - Wearing blue today in honor of my cousin Ian and rare disease day. I love you Marci Weinberg Scher, Brian and Becca!|
Julie Onnembo - I could only get my feet and legs but still sporting the jeans today. Love you!
Jami Schultz Margolis Wearing my blue jeans today , in support of world rare gene day, in memory of our superIan,~just as we have every year in honor of Ian. Love you Marci Weinberg Scher Brian Scher
|Gregg Levitan - For Ian, Marci Weinberg Scher|
|Bree Hackaman and Amy Samay|
|Erika and Sarah Buchdahl - All about Ian today!|
|Michelle Levine Davis Wearing jeans today for Rare Disease Awareness Day. In memory of my Sigma Sister and Friend's son Ian who lost his battle with a rare disease last year at the age of 13. Love you Marci Weinberg Scher 💜💜💜|
|Jenn Firsch and Alyssa Fraizer - We are rocking our jeans today to support Rare Disease Day in honor of our friend Ian who lost his battle earlier this year. We miss you and are holding tight to our string. Marci Weinberg Scher Brian Scher and Becca you are in my heart everyday.|
Heather Smith Macchia - Today, I am wearing my blue jeans for Rate Disease Awareness Day in memory of Ian Marci Weinberg Scher💙
|Julie Kaplan - Wearing my blue denim Genes Ribbon in support of Rare Disease Day and in memory of my cousin, Ian Scher.|
|Marci Weinberg Scher. In support of rare diseases and in memory of the Amazing Ian Scher. <3 span="">3>|
|Kenzie Lewis - Today I wear this ribbon for rare disease day. Something that is very close to my heart. Today I wear this ribbon for my superhero, my cousin, my best friend, Ian. I wear this ribbon in memory of him, and for all those who have a rare disease.|
|Kenny Culberston - Sporting my jeans and ribbon today to celebrate Rare Disease Day in memory of Ian Scher, who left this world too soon. My deepest sympathy goes out to Brian and Marci Weinberg Scher and the rest of her family. Prayers go out to everyone who is or knows someone who is suffering from a rare disease. #Nevergiveup|
|Josh Lewis - Ribbon and jeans for Ian today|
|Lilah Henderson - wearing Blue for my hero|
|Jodi Postol - It's World Rare Disease Day, and I've got my jeans on in memory of Ian. I know he is smiling and sticking his tongue out at all of us today with pride.#rarediseaseday Marci Weinberg Scher|
|Jill Pelovitz - Today on World Rare Disease Day the Pelovitz Family is wearing jeans for Nadiya and in loving memory of Ian Scher.|
|Susan Lewis - In memory of my superhero, Ian, and in support of all those that suffer from a rare disease, everyday.|
|Cheryl Snyderman - This one's for you Ian! This year and every year on Rare Disease Day. And Ben - this is for you too! BTW big guy - awesome jumping into the pool!!!|
|Chizuk Amuno Ladies|
|Melissa Randazzo - Wearing my blue jeans for Rare Disease Day. For Ian the Superhero and for me. Spreading awareness|
|Kelli Maples Bethel - Supporting Rare Disease Day, Marci Weinberg Scher, and Family, sending lots of love!|
|Rivky Flamm and Tzvi Haber - Chia Lifeline thinking of Ian today and every day!|
|Lesley Brinton - Rare Disease Awareness Day. We care. — with Marci Weinberg Scher.|
|From middle school through high school Kayleigh has helped her student councils raise money forRare Disease Day, by encouraging girls to donate so that they may wear Jeans for Genes instead of their school uniforms. This year was bittersweet as we remember our friend ,Ian. Thinking of you and sending lots of love, Marci Weinberg Scher andBrian Scher! Pictured is the Sophomore and Freshmen classes at Mercy High School,|
|Lara Fruman - Wearing jeans today in honor of many, especially Ian ❤ with Marci Weinberg Scher — with Leanna Diffendal, Brooke Fruman, Penny Glickman Lippman, Amanda Fruman and Marci Weinberg Scher.|
|Alyssa Postman - The last day in February is pajama day at school, so I didn't get to take a picture in jeans. But today is still Rare Disease Day, and so in Ian's memory I'll post a photo of my favorite super hero instead, from around the time I worked with him at Milldale, when he and his family began to teach me about what strength and super powers really mean.|
|Connie Berman - Wearing my jeans for rare disease day. Remembering Ian. Xoxo|
|Allison Friedman - Wore my Denim jean shorts today... Lots of Love to one of the best families i know! #RareDiseaseDayMarci Weinberg Scher Susan Weinberg Lewis Kenzie Lewis|
Bryna Bernstein - Marci Weinberg Scher- Michael and I wore our ribbons today in honor of Ian and Rare Disease Awareness day. Sorry no picture.
|Irina Goldsmith - Wearing jeans to honor Ian and commemorate rare disease day.|
PS... She hates jeans normally but wore them happily today. Lol
|Lisa Smolen - Drew and I proudly wearing our rare disease ribbons in loving memory of Ian Scher and everyone else who is battling or knows someone battling a rare disease💙 — with Marci Weinberg Scher.|
|Melissa Willen - Wearing jeans for Rare Disease Day and Ian. With Marci Weinberg Scher. xoxo|
Nuchie Zirkind - Thinking about your beautiful family, and Ian today. I don't have jeans, but we gave extra charity in his memory. You inspire me every day!
Daean Menke - sending hugs and love to you on this day of awareness for rare diseases.
Adina Levitan - Always thinking of little man! Love you all
Cathy Thomas - We all wore our jeans today to bring attention to Rare Disease Day. Remembering Ian and thinking of the Scher family especially today!
|Bethany Hackerman - In honor of Ian ,my friends and I wore our denim ribbons. Here are a few pics of those who wore them but there were many more who did. It's just great that even though there are some that didn't know Ian or anyone with a rare disease but they asked what the ribbon was for and I told them and they were like can I have one . See that is how fast the support can spread. Miss you Ian. 😢|
|Leslie Malsbury Old - Even though you can't see our jeans, This is for Ian in honor of rare disease day. Marci Weinberg Scher|