Help 4 HD Opens Relief Fund for COVID-19 HD Patient Assistance
Katie Jackson: Hello everyone and welcome back to Help 4HD TV. Today we are going to be talking about our relief fund. We are getting ready to, be able to open that back up, for COVID 19 patient financial assistance. Before we start talking about that we've been asked by, a couple of community members when we launched this and promoted it what our stories are and how HD impacts our lives. We're going to run just about one quick minute a piece, and then we'll get into the relief fund.
I met my husband when I was very young and we always played together as kids. We ran with the same group of friends and, I started fully dating him in college, so we were very young love. we had our first child, when I was 21, Madison, our beautiful oldest daughter. Then a couple of years later we had Cooper. But in between that, we got married.
He was estranged from his father and we found out, by phone call that his father had passed away from something called Huntington's disease. It had been a word that had been the kind of talked about in the past, but I didn't really know what it was and my husband, Mike really didn't either. He wasn't, he got tested right after that call and he did test positive for HD with a CAG of 49.
My husband just passed away, on August 25th at 41 years old. He fought HD, a long, hard battle for 14 years, and I now have three children at risk. I will keep fighting for my children and all my friends, in the HD community. That's a little bit of my story.
Katrina Hamel: I grew up in an HD household, but we didn't know that my mom had Huntington's disease.
My grandmother passed away when I was young, but we didn't really know why she was across the United States, and we didn't understand the depths of what was going on. Later on, in my life, we found out that my mom had Huntington's disease or that she was at least at risk. We didn't have any testing or diagnosis or anything like that. We had just kind of started hearing that she could possibly have a disease that's in her family called Huntington's. I had already had two of my three children. At that point in my mind, my children were at risk for myself needed to get tested.
I have two younger brothers and nieces and nephews at risk.
I tested negative and my older brother, Kevin, tested positive. I have two younger brothers and nieces and nephews at risk. My family is from the Connecticut area, and I had several uncles, aunts, cousins, and the like.
Currently I take care of my older brother, Kevin, who has Huntington's, as I mentioned, and I am his primary caregiver along with my dad. I also cared for my mom who had Huntington's until the end of her life, and I continue to fight for my family members and the community in which I love.
Moving on to what Katie was talking about prior to our, impact in HD is our relief funds. So, all of us kind of being a part of the HD community, we all, know, what it's like to have financial needs when one of us are caregiver or both of us have to stay home and are unable to work. We are excited to be only temporarily open up our relief fund. Due to all this happening with COVID 19.
This is supported by a grant from Genentech, a member of the Roche group, and the Griffin foundation. We're just very thankful.
Katie Jackson: I'm going to walk you through on, who qualifies for this program and how this program's going to run.
If you have a loved one in a care facility, you can apply as well as long as the needs are going to your loved one with Huntington's disease.
One of the qualifications is you have to be, an HD family, of course, and you have to have someone living in the home with Huntington's disease. We kind of made an exception. That's our normal relief guidelines. But we really made an exception because we keep hearing stories of a lot of families that their loved ones are in care facilities and they are trying to care for them and love them from a distance.
We also have opened that up. If you have a loved one in a care facility, you can apply as well as long as the needs are going to your loved one with Huntington's disease. This is for food and, quality of life essentials. It's not for copays or medical bills or anything. It is for people in the United States only. I realize that that's really hard we're constantly in contact with our international community. Our radio show is international. We've done a lot of different international programs as far as supporting other organizations that are international and partnering with them.
We also, this year, it was great to be able to open our relief on during the holiday season internationally, and we were able to send relief to Australia, Europe and Canada. But this specific grant is meant for the United States.
We are applying for a lot of grants right now. And we have different programs, so hang tight with us. Hopefully we'll be able to open more things up to our global community.
Katrina Hamel: People can use these cards for essential items.
We are opening this up specifically for things like food and cleaning supplies or shampoo. They will be in the form of an electronic gift card. We will discuss that further once we contact you, which we will do in the coming weeks in order to make sure that everyone qualifies and then we can determine which cards are most appropriate for you.
Sometimes you may have to use money that you would be allocating for your groceries and pay the lights, and we understand that. We'd like to come in and help support you with your food or with your daily essential items. Now Katie is going to walk everyone through the portal and show you what it will look like when you try to apply for this relief.
Katie Jackson: I'm going to go through the portal. Like Katrina said, this is just step one. This is just you applying and making the first contact with us. When you go to this URL, which we'll be posting in our comments and everything, so you guys can get there easily. You will come to this page right here.
This kind of talks about for food and quality of life essentials. This program is meant to help families living with Huntington's disease during financial crisis due to COVID 19. These are our grant providers, which we are incredibly thankful to them for helping us. This program is for qualifying Huntington's disease families only. There's one request per household. This is very important. We've, in the past, had multiple requests coming in from one household. We actually can see that happening. So just make sure there's only one for household.
Help 4 HD will be taking no overhead from this grant whatsoever.
This program will continue until grant funds are distributed. I think that that is really important. I really want to give a plug, to Help 4 HD cause I'm so proud to be a part of this company. Help 4 HD will be taking no overhead from this grant whatsoever. All of the money that has been granted to this program will go to Huntington's families. We will take none of it as a company. We will make sure that all of those funds do get distributed to families who are in need. One application per U S household and we do reserve the rights to refuse any application. We do go through a heavy screening process here because we want to make sure that these grants are given to our Huntington's community that needs them.
When you apply, these are just basic questions about your name, your address, city, State, zip code, email address and phone number. Please make sure you fill this out accurately. We have had requests come in through our relief fund in the past where phone numbers have been wrong or addresses have been wrong, even emails. Email, we may be giving you the relief through your email electronically, so you need to make sure the email is correct.
Phone number. We will be calling and screening you, so please make sure your phone number and your email and all your information is accurate. or else we will not be able to get ahold of you.
How many people live in your households.
Question three is just an acknowledgement that you are caring for someone with Huntington's disease or juvenile Huntington's disease, or that you have a loved one in a care facility that you are caring for and you're getting this relief for them.
At the bottom, all the rest is just some more disclaimer stuff.
At the end of this, you will hit the done button. When you are finished, it will get to us by email. You should get an acknowledgement at the end of the survey that it has been sent to us and you could expect to hear from us in a couple of days. Maybe a week at the most.
We'll try to get to you guys as soon as we possibly can once we get your application in.
Katrina Hamel: If anyone at all has any questions or is struggling to apply, please let Katie or I know. You can let us know through the website itself at Contact Us. Or you can email us directly. Our emails are our first names. For mine, it's firstname.lastname@example.org. For Katie, it's Katie@help4hd.org. We really want to make sure that any family that could be using this relief during the COVID 19 times is able to apply. We don't want to make this any harder than it needs to be. Just contact us if you need some help. Thanks for watching. Ask your friends and families to watch Help 4 HD TV as well. Let's stay connected as a community because together we are stronger.
Katie Jackson: Just to let you guys know, this is a new program, Help 4 HD TV.
We will be doing a lot of announcements and doing things like this for new programs and projects at Help 4 HD International. Make sure you like this video. Subscribe to our channel and, ring the bell for notifications. So, you know, when new videos come up like this, that we'll be talking about subjects about Huntington's disease, or new projects or programs at Help 4 HD International.
Until next episode, we will see you guys. Everyone, stay well.