My Eighth Annual Fundraiser is in the Books!

Thanks to all of my supporters, the 2023 Fishing for Brooke’s Cure fundraiser was another huge success. In the morning the fishermen were met with high muddy water and no interest from the fish. Ralph, Ian and daddy hit the road to try to find better conditions in another river. Fortunately the conditions improved and they came back to the original river where Mike and Hans were putting on an absolute clinic. Conditions continued to improve throughout the day and an outstanding catch was put together. Hans reclaimed the crown with a staggering 181 fish caught with Mike (last year’s champion) right on his heels posting 175 fish. In total, 496 fish were caught raising nearly $37,000, all of which goes directly to research for improved treatment and a cure.

My 2022 fundraiser was a cold one, but a success nevertheless!

The seventh annual Fishing for Brooke’s Cure Fundraiser got off to a frigid start with temps below freezing! The guys split up and drove to separate rivers in an attempt to find a better bite. Despite the poor conditions, a total of 121 fish were landed. Mike K. repeated his catch leading performance from the previous year and again led the anglers with 40 fish! Despite the frigid conditions, we managed to raise nearly $29,000; all of which will go directly to cystinosis research!

My 2021 Fundraiser was a Record Setter!

The sixth annual Fishing for Brooke’s Cure Fundraiser was one for the record books. We had a new angler (Mike C.) who helped reach out to new donors and managed to land some fish as well. The guys fished multiple streams from shore and also spent a fair amount of time in the canoes. The weather and fish were cooperative resulting in a new record total of 382 fish landed! Mike K. stepped up to the challenge and led the group with 93 fish! All the elements combined for our new fundraising record of over $30,000 raised; all of which will go straight to cystinosis research!

My Fifth Fundraiser is in the Books!

A limited group of anglers including Daddy, Ralph and Hans were able to make it to North Carolina for my fifth fundraiser. Captain Heber of Roanoke Outdoor Adventures was kind enough to again supply canoes making the day possible. The fishing was tough but somehow the three of them managed to land a total of 164 shad and in the process raised over $27,000 for research! This year Hans managed to out fish Daddy, but Daddy assures me it will not happen again…

2019 Day of Hope!

We were thrilled to head out to California again for the CRF Cystinosis Family Conference and Natalie’s Wish gala. We were so happy to visit with all our friends and other families who deal with the same challenges that I face every day with cystinosis. We were encouraged to hear about all the ongoing research especially the recent approval for the upcoming gene therapy trial. Its great to see that our fundraising efforts are going straight towards new treatments and a potential cure for cystinosis!

Another Successful Fundraiser!

Daddy and his friends Hans, Ian, Mike and Ralph made a long trip down to North Carolina to raise funds for kids like me with cystinosis. The river was very high and muddy due to record rainfall and flooding, but they persevered and somehow managed to catch a combined 235 shad; raising over $28,000 for cystinosis research! I am so thankful to all the people who made a pledge for the fisherman and made this year’s fundraiser another huge success!

Fourth Annual Nemours Cystinosis Family Conference

Mommy and Daddy did a great job planning the 4th annual Nemours Cystinosis Family Conference!  This year, we had the event in the City of Brotherly Love, Philadelphia!  Mommy worked hard for months planning this event, and when Mommy realized just how big this event was going to be, Daddy stepped up big time and helped with the final pieces of planning and played a huge role in MC’ing the event!  We had amazing speakers again this year.  Doctors Paul Goodyer from McGill University in Montreal and Larry Greenbaum from Emory University in Atlanta gave very informative presentations about cystinosis including current research and potential new treatments.  My doctors from Nemours JJ, Gannon and Thacker also gave excellent talks about all the ins and out of treating such a complicated condition.  It was our most successful event yet – we had 27 cystinosis families from all over North America in attendance, with almost 100 people there!  There is no better feeling that hanging out with other cystinosis families and listening to messages of hope from our doctors and researchers!

2018 Cystinosis Summer Vacation

Woo hoo!  I got to spend a long weekend in upstate NY with my cystinosis BFFs Charlotte and Lily this summer!  Mommy and Daddy loved hanging out with their parents (and Charlotte’s baby brother, Alex) too.  We spent our days at the lake fishing or in the pool playing, and our evenings in the kitchen and family room eating, snuggling on the couch watching movies, and playing with my Littlest Pet Shop toys.  Each morning we ran up and down the big hill together, and made our parents chase us all over the place!  It’s so nice to spend time with my friends who understand the medicine breaks, the nausea, the food pickiness and time constraints, and the water breaks!  Mommy and Daddy enjoy having friends who they can talk to about anything; cystinosis-related or not.  We can’t wait to plan our 2019 vacation with these two wonderful families!

2018 Day of Hope

This is our third year in Newport Beach, CA for the CRF Cystinosis Family Conference and Natalie’s Wish gala. It’s always so nice to see my cystinosis family and to spend time with others who know what day-to-day life is like for us! We learned a ton at the conference, and are so excited and hopeful about the progress made on the cure and eye treatments. There are a couple of really cool things on the horizon! Thanks always to Nancy, Jeff, Natalie and Alex Stack for their love, support and perseverance! We are forever indebted to the CRF!

My Third Fundraiser!

What a day! On April 13th (my Mommy and Daddy’s 5th wedding anniversary!), Daddy, Hans, Ian, Mike and Ralph went fishing to raise funds for my fundraiser! I’m so proud of my Daddy and his friends. They caught fish and raised over $25,000 for me and my friends! All of this money goes to the CRF, which use 100% of donations to find a cure and better treatments for me! I am so grateful that Daddy and Mommy and I have such amazing friends and family who help fight this battle with us. Thanks to everyone who donated.

The ATAXIAN

While in Washington DC for Rare Disease Week we got the chance to meet Kyle Bryant and his friends from the Friedreich’s Ataxia Research Alliance (FARA).  Like cystinosis Friedreich’s Ataxia (FA) is a rare and incurable disease.  Kyle and his friend Sean Baumstark did the Ride Across America bike ride to raise funds and awareness for FA, all of which was documented in their amazing movie The Ataxian.  If you haven’t seen it, I totally recommend it!  Also, the cool thing is that Dr. Cherqui, the brilliant researcher working on the cure for cystinosis, has been able to use the same technique in her stem cell studies for both cystinosis and FA!  This is just another example of how donations to CRF benefit other diseases, both rare and common!

2018 Rare Disease Week Washington DC

Mommy, Daddy and I went to Washington DC with other people from the Cystinosis Research Network for Rare Disease Week.  While there we were able to meet many people who are fighting different rare diseases, but who are also going through many of the same challenges that I have with cystinosis.  We were able to meet with representatives from Cory Booker, Robert Menendez, and Donald Norcross’s offices as well as sit down with South Jersey’s own Frank LoBiondo.  Mr. LoBiondo has always supported funding for NIH and many other causes important to people like me with a rare disease.  He was a super cool guy and I gave him a big high five! (He even showed me a video of his puppies!)

My Trip to NIH

The NIH has been a real champion of cystinosis; they were instrumental in the development of cysteamine.  Cysteamine is the drug I take to slow the progression of cystinosis.  The NIH is conducting a long term study of cystinosis and I was happy to be a part of it.  Mommy and Daddy ran me about the building to see a lot of doctors who looked at my eyes, bones, teeth and kidneys.  All things considered, the doctors thought I was doing great and told me to keep up the good work taking all my medicine.

Third Annual Nemours Cystinosis Family Conference

For the second year in a row, Mommy helped plan the Nemours Family Cystinosis Conference with my doctor JJ and my friend Chandler’s dad, Clint.  This year was even bigger than last year, and we had 16 families from all over the east coast attend the event, with a total of over 70 people in attendance! I met new friends (two who are my age!) and had so much fun with all of my cystinosis family.  Then, after the event we went to Chandler’s Chance Christmaspalooza, a Cystinosis Research Network fundraiser at Chandler’s house.  Santa Claus was there and I got to dance to some pretty cool music!  I can’t wait to see how big next year’s event is!

Second Annual Fishing For Brooke's Cure Fundraiser

The 2017 fundraiser was a great success, daddy and his friends fished from sunrise to sunset (and a bit of time before and after!) and braved the miserable, cold and windy elements.  They were sore and freezing at the end, but the anglers fished their hearts out and caught an overall amazing count of 172 fish!  While the fishing wasn’t as fruitful as last year, as a result of their perseverance the anglers were still able to raise an impressive amount of money for me and my friends in the cystinosis community.

2017 CRF Day of Hope

In April we traveled out to California for our second CRF Day of Hope and we were able to see many of our friends in the cystinosis community.  Mommy and Daddy were especially happy to see some of the other parents, especially the ones that listened to them and gave them advice a year ago when I was first diagnosed with cystinosis.  We were able to present a huge check to CRF during the Natalie’s Wish Gala which represented all the donations from our friends and family.  During the auction the generous attendees at the event enabled CRF to raise another $3.6 million, all of which will fund research to help cure me and my friends!  Mommy and Daddy were also able to listen to presentations about all the progress that was made over the past year. Daddy was especially happy to learn that so much progress has been made over just the last year.

My Trip to Stanford

If you have ever googled cystinosis to learn about my disease, you've probably learned about Dr. Paul Grimm, one of the leading nephrologists specializing in cystinosis.  We had the pleasure of meeting him in December at the 2nd Annual Nemours Cystinosis Family Conference, and again at his cystinosis clinic in February at the Lucille Packard Children's Hospital at Stanford University.  That's right folks, I got to make a trip to sunny California, and it was amazing!

Every couple of months Dr. Grimm has cystinosis clinics, and sees patients from all over the country and beyond.  He has seen over 80 patients with cystinosis, and is definitely one of the leading experts in my ultra-rare disease.  I have been doing very well on my medicine, but Mommy and Daddy felt that if anyone could answer their questions and confirm that my current medicine regimen is sufficient, it would be Dr. Grimm.  Dr. Grimm spent a lot of time talking to us about everything from my water intake to my current medicine dosing - when, how and why.  In fact, Mommy and Daddy wouldn’t shut up with all the questions, they really grilled him.  We are so grateful to have Dr. Grimm accessible and committed to our community, and it was a perfect way to spend Valentine’s Day.  Dr. Grimm is definitely my Valentine!!

I also got to meet other kids with cystinosis, and we got to spend time with an amazing mother and son from California who we adore and admire.  It always makes me feel happy to meet others like me, and to know the Mommy, Daddy and I are not alone in our fight for better treatments and a cure for cystinosis.

Growth Hormones

Mommy always says I have the happiest outlook on life, mixed with a little sassiness, which is exactly what I need to handle tough cystinosis situations.  This positive outlook is definitely helping me with my growth hormones, which I just started about a month ago.  Mommy and Daddy give me a shot of growth hormones every night before bed to help me grow and, potentially, increase my appetite.  Another benefit of growth hormones that researchers are looking into is the potential positive effects growth hormones can have on my muscles and most importantly in the prevention of muscle wasting which I will have to handle in the future.  As you can tell from my picture, I love Doc McStuffins, so I always sing the Doc McStuffins song about shots just "tickling" a little, and although it pinches I bounce right back and keep on keeping on.  I really am Mommy and Daddy's hero!

Second Annual Nemours Cystinosis Family Conference

Mommy worked so hard to help my Doc, JJ, and our friend Clinton Moore with the 2nd Annual Nemours Cystinosis Family conference.  The event, which was held in Sussex County, Delaware, was a huge success!  Dr. Paul Grimm, one of the leading experts in Cystinosis, was the guest speaker, and we had ten cystinosis families from all over attend the event!  It was such a positive and inspiring event, and it made me feel so good to spend time with my other friends with cystinosis.  I know Mommy and Daddy learned a lot and had fun with my friends' parents as well.

After the event, we all attended the Moore family's annual fundraiser, Chandler's Chance, which raises money for the Cystinosis Research Network.  It was an amazing and successful event - I got to take a ride in a first truck, listen to a live band, see Santa Claus and spend time with some amazing people!

Mommy was honored when asked to help plan the event, and really enjoyed every aspect from planning to setup.  She and Clinton are going to team up again next year to plan an even bigger and better event!  We are also so grateful to have Nemours DuPont Children's Hospital and, more specifically, JJ (Dr. Joshua Zaritsky), my nephrologist, spearhead these cystinosis events.  We love him, and all of the staff at the hospital who've been so loving and amazing this past year - Nemours is the best!
 

My New Button

It's been a tough couple of months for Mommy and Daddy as they've struggled to make the decision whether or not to get a g-tube for me.  A g-tube is a feeding tube in my belly that can be used for blended foods and liquids as well as medicine administration.  In the end, Mommy and Daddy reluctantly decided to go ahead with the surgery because my growth has just been too slow.  Mommy tells me it will make me big and strong.  Daddy tells me that I won't have to taste my yucky medicine anymore!  I trust them and my doctor, JJ, so I know they're making the right decision.

I have great doctors and the g-tube surgery went great and I've healed perfectly!  Mommy and Daddy are happy and I like not having to taste my yucky medicine anymore.  Mommy makes healthy blends to feed me through my tube, and medicine time is much easier than before.  I’ve started to like my extra “button” and hopefully I will start to gain weight and height soon!