We Can Do It Together

We Can Do It Together

I sat at a nearby bar long after the fundraiser was over talking with Jean.  We talked about the joys and the struggles of raising a child with special needs.  As we talked, I was reminded of my own experience after Taylor was diagnosed in January of 2018. After the initial impact of receiving an official diagnosis, I wanted to know how I could help.  I wanted to find out as much as I could about the condition. I wanted to connect with other families.  I wanted to raise awareness for a genetic condition so obscure, only 300 people are diagnosed to date.  I wanted to do EVERYTHING I could to set Taylor up for success.  

Read More

Top 9 Issues Facing the Rare Disease Community

Top 9 Issues Facing the Rare Disease Community

Rare isn’t really all that rare….according to the National Organization for Rare Disorders (NORD) 1 in 10 people live with a rare disease, and this does not include the millions, living with an undiagnosed, rare condition. About 7,000 rare diseases have been identified and advances in genomic testing are finally allowing us to identify and discover new conditions.  However, the journey does not end with a diagnosis.  The fight for appropriate medical care and services is ongoing in the rare disease community. Here, we highlight nine of the most significant issues affecting the rare disease community (and as you will see, one thing can lead to another):

Read More

10 Tips for Supporting a Parent of a Child with Special Needs

10 Tips for Supporting a Parent of a Child with Special Needs

Not sure how to support your loved one who has a child with special needs?  You are not alone.  Most people are unsure about how to respond to a family when they receive a potentially devastating diagnosis.  You may not know what to say or how to help.  You may feel the relationship growing distant and not know why.  Although you may feel uncertain about what to do, there are many ways you can support a parent of a child with special needs, and let me tell you, we NEED your support….now more than ever. 

Read More

6 Tips For Talking With Your Child About Disabilities

6 Tips For Talking With Your Child About Disabilities

We have all experienced it.....you are having an eventful shopping trip to Target (one where you claim you are going to buy sunscreen, aaaaand $175 later.....)  You have cleared out the store and are waiting patiently in the check-out line.  You look into your shopping cart and see your child staring, aghast at a person in a wheelchair and then loudly proclaiming, "Mommy, why is that boy drooling?!" 

Read More