Here's an excuse to run home and change into jeans for the rest of the day and night!

Today is Rare Disease Day and these Howell girls would like you to share this post:

Allie Crocker is a freshman at Howell High School. Her sister, Jonna, is in 8th grade at Howell Middle School North. Together (along with their parents) they run a nonprofit foundation called Fighting HARD. HARD stands for Having A Rare Disease.

Their mission is to help kids like them who have rare diseases or chronic illnesses so that they know they are not alone! They do this by sending care packages, raising awareness, and helping out financially with medical needs, medications not covered by insurance, dinners, or even some family fun days to help their families get through difficult days.

They have even started a Fighting HARD Family Fund for $10,000 at a local children's hospital.

Today, Feb. 28th, is Rare Disease Day, (since 2/28 is the rarest day of the year). Today there are lots of schools throughout our state participating to help raise awareness and funds for the foundation. For example, staff members at Howell High School are selling patches for students to decorate their jeans, as well at handmade jeans ribbons.

In fact, the Howell High School principal is even wearing a jeans jacket with ALL of the patches that the students decorated on it! Other schools are decorating jeans cutouts and hanging them around the schools, or decorating jeans or hosting competitions. It's all about creativity, fun, and, most importantly, raising awareness.

This afternoon and evening at Panera Bread (4715 Rt. 9, Howell) from 4 pm - 8 pm, many will gather to show off their jeans and get together with their Fighting HARD families. Panera will even be donating a portion of their sales to this great cause.

So...why "Rare Your Jeans" Day? Since 80% of rare diseases are caused by faulty/rare genes, many of which are invisible, it became important to Allie and Jonna to make them visible.

Allie and Jonna are fighting HARD every day and are looking forward to helping even more local families who are Fighting HARD!

Allie has been battling many chronic illnesses for most of her life, such as Crohn's Disease, Juvenile Rheumatoid Arthritis, and overall chronic inflammation. This was always kept a secret from her friends, teachers, and even some members of her family. But Allie began to feel isolated because it felt like her illnesses were taboo.

Imagine never being able to accept an invitation to a skating event or pizza party. Eventually there came a time when Allie finally wanted to break out of the shell she was in. But, since she felt no one could understand, she felt that it was time to start raising awareness of what she (and others) go through when they have chronic illnesses and rare diseases.

She and her parents began looking for a support group that she could be a part of, and were astonished at the fact that there were barely any resources out there. That's when Allie decided to start one of her own. The Fighting HARD Foundation is now a big part of her life.

Here are some of the facts that Allie would like to make you aware of, so that maybe you can share this information with your children to help foster an understanding and awareness in them:

-- 1 in 10 people have a rare disease, and, out of everyone fighting rare diseases, over half are children. 30% of those children will not even live to see their 5th birthday.

-- 95% of rare diseases do not have a single FDA approved drug to help treat/cure them.

-- 80% of rare diseases are genetic.

To learn more or see how you can help raise funds and awareness for this important cause, CLICK HERE!

Money that comes into the foundation goes directly to the kids and families who are Fighting HARD. This includes covering expenses for flights or Ronald McDonald house stays for important treatments, and putting money into a fund at K. Hovnanian Children's Hospital so that child life specialists can buy dinners, etc., for families to take stress off of their plates while they are admitted into the hospital.


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