Meet Our Board of Directors
Kathi Kayo, Director
Our Mission is to educate the community about Intracranial Hypertension, raise IH awareness, and provide support for IH'ers and their families.
1) Educate the community about IH, raise awareness of IH, and advocate for IH patients in the hope of finding a treatment and a cure
2) Connect IH families with existing rare disease communities and programs
3) Provide grants for assistance with medical expenses including surgical bills, treatment-related travel expenses, prescription medicines, and IH service/assistance dogs
When Kathi was diagnosed in November 2009, we had never heard of IH. The first term her doctor used when explaining it to us was Pseudotumor Cerebri. He explained that it meant the disease exhibits the symptoms of a brain tumor without the actual tumor. We researched this and found that Pseudotumor Cerebri is also known as Intracranial Hypertension. We devoured all that we could about this disease, but found that there really isn't much out there about it and that there is no cure for IH. It's a frightening thing to hear that your daughter has a disease that is not only incurable but also terribly unknown. If hardly anyone knows about it, Kathi and I thought, then what are the chances of finding a cure??? So we resolved to do whatever we can to make IH more widely known.
Having a rare disease is very isolating. It often seems that no one understands what you're going through. We were blessed during our research to find IH support groups online. We were blessed to help establish different support groups as well. Because these communities have been such an integral part of our lives and have been a real lifeline at times, it's important to Kathi to provide a way for IH patients to connect with these communities and with each other.
Being a single parent household, we know what it's like to be faced with mounting medical bills and have to question whether each ER trip is really necessary because -- even with insurance -- that trip is going to be costly. We know the frustration of running out of medicine and not having the money to have it refilled, or finally getting an appointment to a specialist but not being able to afford the copay or the gasoline to get there. Kathi doesn't want any other IH family to have to experience these dilemmas when it comes to pursuing necessary medical care, so she wants to provide a resource for families who need financial assistance.
Having severe, unpredictable balance issues, Kathi was approved for a Mobility Assistance service dog. In order to receive the dog more quickly, Kathi worked hard to raise funds for it. This took quite a toll on her, worrying about whether or not she would be able to have the service dog she needs and wondering when she might be able to have the independence and security that comes with owning a service dog. She doesn't want any other IH sufferer to go through this same stress and anxiety. She has said that she wishes there were a foundation that could help her with a grant for her service dog. Having been unable to find one, she has decided to establish a grant for IH patients who are approved for service dogs.
Kathi also knows how cold (literally) and sometimes scary it can be when you're in the hospital for a spinal tap, MRI/CT scan, or even surgery. She knows how comforting it is to have something cuddly to hold onto when you're alone, and to whisper your fears to when you just can't tell anyone else. So she has decided to make her Kathi Bears available to IH patients who are hospitalized and need a special friend to bring them HOPE.
Your support of Kathi's foundation will help fund these endeavors. Thank you for your generosity, from all of us in the global IH community.