Fighting HARD

We are so very thankful to the Blood by Fire Motorcycle Club and all of the sponsors and bikers who will be there today to help support children with rare diseases and chronic illnesses! Bikers truly have the biggest hearts and we are so blessed to be chosen as one of the beneficiaries each year for their incredible rodeo fundraiser!
Today is the day!!!! Thank you so much for Fighting HARD with us! Stay safe! 💜🏍️🔥

October is here! Lots of awareness days this month to check out! Sending love to all of our kiddos who are Fighting HARD, this month and always! 💜

Hello everyone! ☺️💜

We are super excited to share about an upcoming fundraiser event that we will be hosting at the incredible Tall Oaks Brewery in Farmingdale, NJ! We know that Halloween can be a difficult time for some, so we wanted to have a fun, safe, inclusive night for all of our families and supporters. Join us for Boos and Brews!! 🎃👻

Please take a look at our flyer and click on the link below to register for this family-friendly fun event! Tickets are $30, but all children are free. This is a limited capacity event, so make sure to get your tickets NOW!

*Please note that brews will be available for purchase for those 21 and over. 🍻 Can’t wait to see you all there!

https://us.list-manage.com/16KfU2ZjDzp?e=9238dd9990&c2id=c0bb6d435ad09cb41afc1498ba8c7623

Last month, Allie and Jonna had the chance to meet Andy Grammer :)

Andy Grammer is a singer-songwriter known for his uplifting songs, including “Keep Your Head Up”, “Don’t Give Up On Me”, and “Good to Be Alive”.

His music is incredibly inspiring for those in the rare disease world. His lyrics focus on staying positive through the tough times and continuing to persevere.

When we met him, we shared a little bit about Fighting HARD Foundation and what we do for the local community. We also were able to give him a t-shirt, so he is Fighting H.A.R.D. with us each an every day!

Scroll through to see the private performance of “Keep Your Head Up”, a special song for our rare disease warriors 💜

We are sharing about Dystonia today because one of our Dystonia Warriors, Evan, is 17 today!!! Many of you have seen our buddy Evan at events and you already know how cool he is, but did you know that Evan was the first child with his rare form of dystonia to have a DBS (Deep Brain Stimulation) device implanted, helping to pave the way for other kids who might not meet the criteria to receive this treatment?! 💪 Although there is no known cure for dystonia and it is a life-long condition, with hope and medical advancement, the goal is to help control the progression.

Join us in sending all our birthday love to Evan on his special day! He is a true Fighting HARD superhero and inspires us every single day! 💜🎉💜🎉

Sending all our love and strength to Evan and to all of the kiddos who are battling dystonia as part of their rare condition! Keep Fighting HARD and know that you are not alone! 💜💪

Today we recognize Evan’s syndrome awareness day! ❤️

We are shining light on the Evan’s syndrome community and recognizing the strength of the children and families navigating this complex condition.

One of our Fighting HARD warriors, Nico, continues to show that he is stronger than Evan’s syndrome by showing up on the baseball field and rocking his appointments and treatments like a champ!

Today, we are recognizing Nico and all those living with this condition 💜

Today is Kleefstra Syndrome Awareness Day! 💜

Many of you have met rockstar Quinn at one of our Fighting H.A.R.D. events, whether at the clothing drive, Martell’s Music Fest, or our annual golf outing!

Kleefstra Syndrome is a rare genetic condition that can affect development and many systems of the body, including muscle tone, speech and language development, and other medical complexities.

Today, help us send some love to Quinn and all of the Kleefstra warriors out there by sending purple hearts in the comments! 💜💜💜

September is also Back to School, and for many in the foundation, this can be an extra HARD time. Managing a rare disease or chronic illness takes a whole lot of work and a great big team of people working together to help make it happen. Sending lots of love and hope to our families this week and hoping for some really great and understanding teachers, principals, counselors, school nurses, secretaries, attendance officers, and amazing friends who can help make HARD life a whole lot easier!

Sending love to those who won't be able to attend at the moment due to their health or choosing a homeschooling option because that is what is necessary or best at this time...Keep Fighting HARD!

Sending love to all who simply have a different reality than the "norm" and are feeling it extra this week. Keep Fighting HARD!

And as ALWAYS, remembering those who should be starting a new school year this week, and are no longer here with us. Our hearts are with you.

For all of our Fighting HARD Families, we hope you make it the absolute best year it can be! You've got this! 💜💪