When your child is diagnosed with an ultra-rare, life-threatening and incurable disease, your entire life changes. At first, your world as you know it comes to a screeching halt. It can be overwhelming, devastating and downright depressing.
As time passes, you begin to accept the everyday challenges that you face as your new normal. As your child gets older, they seek normalcy and a sense of belonging, and as parent I found myself searching for families who are living with the same struggles.
After my 9 year-old daughter Morgan was diagnosed with Cystinosis at 23 months old, my world was forever changed. I found myself searching; searching for information, for help, for doctors who understood her disease, and to find other families with children affected by Cystinosis.
Through our journey, we found the Cystinosis Research Foundation – a non-profit foundation, fueled by a community of patients, families, researchers and supporters that shared our struggles – that is leading the Cystinosis community’s fight to find a cure. We’ve found ourselves forming lifetime friendships with other families and began our fundraising efforts. We found renewed hope in our community.
On Sunday, September 18th we held the 2nd annual Mulligans Fore Morgan charity golf tournament, at Bob-O-Link Golf Course in Avon, OH to benefit the Cystinosis Research Foundation. The event was kicked off again this year with Morgan lining up her ceremonial first tee shot, with the help of her golf coach, her Grandpa.
It takes guts for anyone to hit a tee shot with 125 people watching, much less a 9 year-old little girl. With no falter in her step, Morgan addressed her hot pink golf ball with a proud smile as the crowd looked on. She swung her club back and launched her ball towards the pin - the onlookers roared and cheered with excitement!
While our 72 golfers – among the pack, TMC’s own Tom Gallucci and his wife – hit the links, Morgan and her little sister Maddie, each worked lemonade stands with the help of their friends, our family and even their teachers from school. We had folks drive as far as 600 miles to attend this year, from Michigan and Pennsylvania to Ohio to show their support! Our family and friends volunteered so much time and energy before and during our golf outing to make our event a huge success.
We also had a record number of hole sponsors this year – 34 hole sponsors – including TMC’s own Rich Swerbinsky – who contributed to the success of Mulligans Fore Morgan. After the golf tournament, Morgan started off the dinner celebration and emceed the raffle, silent auction and golf awards ceremony – she loves her time on the microphone!
This year, through Mulligans Fore Morgan, we’ve raised more than $13,000 to be donated to the Cystinosis Research Foundation. And in the past 3 years, our family has raised more than $30,000 in Morgan’s honor.
On behalf of my family and the Cystinosis Research Foundation, we are so very grateful for our supporters, volunteers and donors. An extra special thanks to my colleagues at The Mortgage Collaborative for highlighting our fundraising efforts. I am forever thankful for your support - you strengthen our family's HOPE for a CURE.
To learn more about Cystinosis or donate to help us find a cure Morgan visit www.cystinosisresearch.org.
Director of Member Engagement, The Mortgage Collaborative
TMC - Chief Operating Officer