3rd Annual Cure Kinley & Kennedy Golf Tournament

3RD ANNUAL CURE KINLEY & KENNEDY GOLF TOURNAMENT

When we first held this tournament in the summer of 2021, we didn't know what to expect.  It ended up being a very emotional, fun, and successful event for our family and the GM1 community.  To say we were blown away at raising $41,000.00 in last year's tournamnet would be an understatment!  We continue to be in awe of the amazing community of friends, family, neighbors, and even complete strangers that we are a part of.  The money we have raised has contributed to multiple research projects and clincial trials that aim to help improve the lives of all children with GM1.

The Cure Kinley & Kennedy Golf Tournament has become our marquee fundraising event each year, and we hope you'll be able to join us as we continue to fight for a cure for this devestating disease!  This year, we've moved the event to the beautiful Greg Mastriona Golf Courses at Hyland Hills in Westminster to take advantage of their larger space and beautiful course.  Rather than a morning and afternoon option, Hylan Hills enables us to have a sinlge, large morning shotgun start for up to 216 players and new this year, if you are not a golfer you can choose to join us for lunch and the raffle.  Get your teams ready!

It's been another year filled with ups and downs for our family.  We've been able to take the girls on several adventures, including returning to Disney's Hawaiian resort, Aulani, where the girls enjoyed the pools, water park and beautiful beach. Plus, they had a fun, personal meet and greet with thier newest favorite Disney Princess, Moana.  We've prioritized these family adventures as we don't know how long we'll be able to do them - at least not in the same way we can today. We have already noticed trips getting to be very hard on the girls. They love them, but the fun also seem to trigger some forms of regression. 

Kinley and Kennedy are both 2 years post gene therapy now, which means only 1 trip to the NIH per year now instead of the 1 trip per quarter we've been doing for the last 2 years.  Unfotunately, both girls have continued to regress. They are medical stable at this time, however, cognitively Kinley has regressed to functioning closer to a 3 year old level. Both girls are at very high risk for seizures.  We notice it on the outside when the girls will stare off in a dream-like state, but they generally snap out of it when you call their name.  Though it's likely a matter of time before they start experiencing more active, violent seizures.

Kinley is getting much harder to understand verbally - even for mom and dad - and has been falling a lot more lately.  We've got an adaptive stroller for her to try to maintain her stamina when we're out and about, but don't need a wheel chair at this point. We moved both girls to a new school this last year to enroll Kinley in the SSN (Significant Special Needs) program.  She loves her new environment and is thriving in that regard. Kennedy loves 1st grade, but she has hit the point where she simply can't keep up in the classroom and, worse, she know's it.  She's expressed to us that she can't do things her friends can, and it's becasue she has GM1.  Still, she has a great teacher and one-on-one para and is always excited for school.

The other exciting news for our family in 2022 was the arrival of Kollins!  Many of you noticed Kylie's bump during last year's tournament, and we're happy to say Kollins joined us 9.1.2022.  We were lucky to be able to leverage technology to ensure she will not have GM1.  The girls are smitten.

As always, thank you for your support, donations, volunteering, sharing of our story, and love.  It means the world to us.

The Harrisons

Kyle, Kylie, Kinley, Kennedy, Kieran, and Kollins

 

Ways to Participate:

Play  

Register here at this site for a single, double, or foursome!

 

Volunteer

Reach out to kyliemcculloch@gmail.com if you'd like to volunteer.  We appreciate help in setting up, checking in, hole games, and pick up.

 

Donate (money or items)

We are looking for items to include in our raffle.  If you have a small business or would just like to contribute, please reach out.  Dollar donations can also be made using the link at the top of this page.

 

Sponsor

Our sponsors are what allow us to create such a successful event and fun day for everyone!  We have opportunities ranging from hole sponsorships to title sponsorships.  Check out the store link to review and purchase a sponsorship.

 

Lunch/Raffle

Even if you aren't playing or volunteering, we'd love to have you for the lunch and raffle.  You can register in the registration link above for a meal.

 

GoFundMe: www.curekinleyandkennedy.org 

Facebook Page: https://www.facebook.com/CureKinleyandKennedy 

Cure GM1 Foundation: www.curegm1.org 

 

Get your Cure Kinley & Kennedy merchandise for the tournament today!  Orders due by June 30th, 2023 and will be produced and shipped at that point, arriving in time for the tournament.

https://carolinasports.printavo.com/merch/curekk