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The HERO Club 5K for PPPD AWARENESS

$230 of $5,000 goal

Raised by 4 people in 13 months
Created June 11, 2018
The HERO Club
Our goal is to raise awareness and funds for a chronic condition that is suffered by my mother and many people across the world, called Persistent Postural-Perceptual Dizziness (PPPD). It is considered to be based on a multisensory maladjustment involving alterations of sensory response pattern including vestibular, visual and motion stimuli. PPPD, also known as 3PD, is a neurological condition that was discovered in 2015 by the Mayo Clinic, MN. It causes it's patients to experience persistent sensations of rocking, dizziness, light-headedness, ocular problems, and makes them completely disabled. Unfortunately there is no cure for this condition. Furthermore, PPPD is widely unknown by many doctors and people alike, and is not even in the ICD codes (The International Classification of Diseases, a system of medical coding created by the World Health Organization to document all diagnoses, diseases, signs and symptoms, and social circumstances.). We will continue donating all of our funds to Dr. Stabb at the Mayo Clinic, MN for further research to discover a complete cure for PPPD.

This is our second year raising awareness and collecting funds for this condition Persistent Postural Perceptual-Dizziness. PPPD is the most common vestibular disorder for people between the ages of 30 and 50 years old. And it can happen to anyone, anywhere as there is no know cause or specific reason as to why it happens to anyone suddenly. 

Please find more information on our website: 
https://www.theheroclub.org
https://www.theheroclub.org/about/
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Want to join me in making a difference? We at The HERO  Club help raise awareness and fund research to discover cures for rare Neurological and Neuro vestibular conditions.  We help and support those who are struggling with diseases like PPPD, MSA, KB etc. Our goal is to build a lifelong passion in all our members to HELP and VOLUNTEER in the community.
That’s us! The HERO (Helping Everyone Reach Out) Club. 

ABOUT THE CLUB
“The Hero Club” is a 501(c)(3) registered non-profit that raises awareness and funds for research on rare neurological and vestibular conditions. We host a variety of fun events for the whole family. Profits from all of these events are given to industry leading hospitals so they can continue their research and hopefully develop cures for these terrible conditions.

MY STORY
From a very young age, my parents taught me and my sister the value of giving, be it family, community or neighborhood. We learned to always give without expecting anything in return. While others might have spent their time playing games, we worked hard at volunteering. And we loved it.

Being honest, I never truly understood what all the fuss was about. I was just like any other kid. Carefree, fun-loving, always playing games, and not worried about anything, especially the future. But one year, when I was 10 years old, an unexpected thing happened in my family. My mom was suddenly hospitalized.

It all started when we went on a trip to the Smoky Mountains. A few days after our trip, she was hit with a massive vertigo attack while she was at work. She also started experiencing flu-like symptoms. After 15-20 days of antibiotic treatment, several tests were done by ENT specialists and neurologists to find the root cause of her condition. My mom slowly became less and less mobile, and on top of this, began to lose sensation in her hands and legs. Within a day or two, she was hospitalized and was diagnosed with viral encephalitis, a condition that affects your central nervous system. She became totally paralyzed for almost a year.

This hit me very hard. My mother is a very influential person in my life, and I felt almost lost without her guidance. I remember when she finally came back from rehab, in a wheelchair. My mom had to relearn how to walk again along with several other things. The entire process was very tough for me and my family, but we persevered, completely changing our lifestyle along the way.

My mom’s determination to be back on her legs is definitely what encouraged me to carry on. She just never gave up.

As many people know, losing someone important to you, or someone who you love is hard, and sends many people into depression. But losing your own self,that’s the harshest and toughest of them all. The fact that she didn’t feel sorry for herself is amazing, and has taught me a very important lesson: never give up, no matter how bleak the situation seems because you can always find a way out with enough patience and diligence.

Months turned into years, and we still didn’t know the reason why her condition wasn’t stabilizing. My mom continued her rehab and medication and continued to visit several new doctors and hospitals, but nobody knew what was happening. We were frightened out of our minds.

Day by day, we waited to see what had happened and what we could do to fix if — it that was even possible. My father was very determined to find a solution for her condition. He took her to many hospitals, including the Cleveland Clinic. Finally in 2016 — after four long years — the Mayo Clinic in Rochester identified that the viral encephalitis and the initial vestibular and balance disorder that my mother suffered from had affected her brain and led to a condition called PPPD or 3PD (Persistent Postural-Perceptual Dizziness). They had just discovered and defined the diagnosis and key symptoms for PPPD in early 2014. The medication and treatment plan was developed later, around mid-2015. Furthermore, as per the information from the Mayo Clinic doctors, PPPD is yet to be added to the ICD (International Classification of Diseases), and this was why no doctors in Ohio knew about this condition. Even within the entire United States, very few doctors knew what this condition was — the number of them could be counted on one’s fingers!

Throughout this entire journey, I noticed how much our community has given our family. We never felt left out of events or celebrations in the slightest. Our relatives, friends, neighbors, well-wishers, my parents’ colleagues and everyone else we know in the community stood by us, and continue to help us in these hard times. Everyone was morally supportive and continue to motivate us constantly.  

My mother’s friends still help out to this day: volunteering to drive my mother to her daily appointments and rehabs. All this kindness completely changed my perspective on life. I realized why my grandparents and family have always been active participants in the community, hosting so many charity events and serving so many people in hardship. It sometimes surprised me the way they all worked together to help people in destitution and need. But after witnessing firsthand some of the terrible things people around the world must go through, my belief in giving has been cemented, and in turn, has shaped me into a better person. It has bestowed upon me a new goal that I will continue to do throughout the rest of my life: Helping Everyone Reach Out.

HOW IT ALL BEGAN
“The Hero Club” is the brainchild of Pranav Yenugu and Amogh Iyanna. It started out from the passion of two students from Mason Middle School who loved (and still do!) to help others. Each was inspired by their own interest and experience to give back to the community. They started off by organizing some volunteer events for “Hands against Hunger.” After participating and working with Mason Middle School on several successful events, Pranav wanted to take the idea above and beyond school boundaries. He decided to extend his help to everyone in the community by “Helping Everyone Reach Out,” which was in alignment with his greater idea.any donation will help make an impact. Thanks in advance for your contribution to this cause that means so much to me.
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$230 of $5,000 goal

Raised by 4 people in 13 months
Created June 11, 2018
The HERO Club
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