Rally on Rainier: Father Climbs For His Son and All Children Impacted by Sanfilippo Syndrome
September 6, 2016
Carl Kapes (father to two sons impacted by Sanfilippo Syndrome or MPS IIIA) has organized a climb called Rally on Rainier for later this week to drive awareness and funding for Sanfilippo.
The climb is a four day guided climb with RMI starting on Sept 2, 2016 and summit on Sept 5, 2016. The climb was organized by Carl Kapes who has two boys affected by Sanfilippo Syndrome or mucopolysaccharidosis (MPS) IIIA. He is also a co-founder of Team Sanfilippo, one of the foundations that helped to get Abeona off the ground.
He has enlisted several others to climb with him including the Cleveland’s own, Tim Miller, Ph.D., CEO of Abeona Therapeutics, as we are working very diligently on a gene therapy approach for Sanfilippo. In fact, this is our lead program and we are now in the clinic having enrolled three patients already!
Participants will be carrying a flag that many of our families have signed in honor of their children living and those who have passed to post at the top.
Meet the Climbers
Occupation: Manager at Pepco Holdings, father to three boys, two who are impacted by Sanfilippo Syndrome or mucopolysaccharidosis (MPS) IIIA, Team Sanfilippo co-founder, and organizer of Rally on Rainier.
Why is Carl climbing for Rally on Rainier?
My sons, Ryan and Brayden, were diagnosed during the summer of 2009 with MPS IIIA. With no available therapy or drug on the market we were told to take them home and love them while we still could. I can’t even begin to describe how devastating it was to be told that my children will die and there is nothing that I could do; well I’m climbing Rainier first and foremost for them.
It’s important to me that the kids and families in this global Sanfilippo community be seen, heard, and known so I am also climbing to bring attention for all continuing their fight with this terrible disease and those who have passed on. Team Sanfilippo is committed to seeking out new heights to raise awareness and funding for Sanfilippo Syndrome. There is still so much more to be done to bring a treatment to Ryan, Brayden and the children who so desperately need it. I am not going to give up for my children and the other children that need my help! We WILL defeat Sanfilippo Syndrome and someday, future parents will never have to go through the pain myself and other families had to endure as we watch this disease ravage our children’s minds and bodies.
Why is Tim climbing for RallyonRainier.com?
As a father of three beautiful children, I’m constantly reminded of joys and challenges of being a parent. But I’m continually amazed and inspired by parents and children in the Sanfilippo community. Mt. Rainier represents a personal challenge – I’ve never climbed above 8,500 ft – but symbolically represents the challenges of developing a new drug product, which you can’t do without a wonderful team! I’m privileged to share the climb with Carl, Nick and Lauren and we hope to raise awareness of Sanfilippo syndrome and children affected by the disease.
Currently, there is no cure or approved therapy for treating children with this devastating disease. It takes so much from them before eventually taking their life. I strive to be shield of the weak, and we’re seeking to bring hope to thousands of families around the world. It’s my hope that we introduce Sanfilippo syndrome, and the potential of gene therapy, through this climb and help Team Sanfilippo raise funds for new treatment strategies.
Everyone is fighting a battle, some daily, but these kids and their families inspire me with their courage Every. Single. Day.
Occupation: Video and Photo Artist with Dazzle Photography.
Why is he climbing for RallyonRainier.com?
I learned about Sanfilippo and Carl’s boys when he and Ashley met with me to discuss their wedding photography and cinematography over two years ago. I saw Carl as a guest at another client’s wedding around Christmas this past year, and while we were catching up he mentioned he would begin training soon.
After learning about the Rainier climb, I felt like there was finally a place where I could apply my time and talent to make an impact for his boys in a unique way. I asked if I could climb Rainier as well.
Although his expedition was full, I booked the next closest climb which is less than three weeks after his, and we began to create some films that would share our ambitious goal of summiting #Rainier and raising awareness of #Sanfilippo Syndrome and funds to help work towards the#cure.
The Rainier expeditions present a number of unique challenges on a technical and creative level, and I’m eager to tackle them and be part of such an exhilarating expedition!
Occupation: Broker with Brazen Sotheby’s International Realtor and Adventurer
Why is she climbing for RallyonRainier.com?
#1 – it’s for a good cause. Team Sanfilippo www.teamsanfilippo.org is a great charity and I would love to help out any way that I can.
#3 – This year has been tough for me. I’m going through a lot of changes and getting to the summit of Mt Rainier is symbolic of where I hope to be in life.#ontop 🙂
Occupation: Radio Producer for Preston and Steve on 93.3 WMMR
Why is Nick climbing for RallyonRainier.com?
#1 – I’m doing it to help my friend Carl S Kapes because I believe in what his mission is and think that he is one of the most focused and inspirational people I’ve ever met.
#2 – If I can help reach just a few people about this disease and the families fighting it then I’m doing my part to help out.
#3 – I also personally like the challenge and putting something on the calendar to prepare for and to take that challenge on, see it through and accomplish it.
About Sanfilippo Syndrome also called mucopolysaccharidosis (MPS) IIIA and IIIB:
- Genetic disease caused by a missing enzyme that breaks down sugar molecules in cells
- No visible symptoms at birth, kids hit typical milestones on time until approximately age 2, significant challenge to obtain diagnosis
- Progressive degradation physically, mentally with severe behavioral issues, sleep disturbances leading to loss of speech, ability to walk, feed oneself and ultimately fatal
- Rare disease impacting 1 in 70,000
- 70% of children with this don’t see their 18th birthday
- No available treatment or therapy on the market
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