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Help 4 HD TV Episode 3 - Virtual HIPE


Submit a question online: https://www.surveymonkey.com/r/virtualhipe

Register for the May 2, 2020 event: https://www.help4hd.org/events-1/help-4-hd-international-virtual-hipe


Katie Jackson: Hi everyone, and welcome back to another episode of Help 4 HD TV. Today we are going to be talking about HIPE. First, what is HIPE? HIPE stands for highly interactive participant education.


We thought of this idea back in 2016 and we launched the program in 2017. We were doing education events, prior to 2016 and they were very science heavy. A lot of people, we look out and they would be almost falling asleep by the end of the day, they were very tired.

Science is very important and we want to hear about the science, but we also realize when we go to education days, we come for a specific purpose. That is to learn. We have questions going into this, in our heads of what we want to learn and questions we want answered.


We decided to introduce HIPE and let that be exactly what that means. It's your questions being answered. You run basically one half of the whole education day. Anonymously, we ask questions. Katrina Hamel and I, we pass out clipboards, you write down your questions, we fold them up.


We wanted to de-identify because we know a lot of times it's really hard to ask questions,

No one knows they're from you. Then Katrina and I would go back and forth, asking our panel of experts the questions that our community wanted answered. That is why HIPE started. We wanted to de-identify because we know a lot of times it's really hard to ask questions, as our loved ones sitting next to us or even if the HD patients, are nervous to ask a question around their caregiver.


It's all de-identified, so no one knows who's asking the question. Because of the coronavirus, we are now having to change a lot of our physical HIPE days to virtual HIPE days, so I will let Katrina talk about a virtual HIPE that's coming up.


Katrina Hamel: We were going to be in Michigan on May 2nd which is just right around the corner but like Katie mentioned, COVID 19 has us all staying home. We will be utilizing the Zoom platform for our virtual HIPE. This is the first one that we have scheduled, and we are hoping to go live with the rest of our events throughout the year. For now, we need to move forward with this education day and make the absolute best of it.


All experts in HD who can answer the questions that you guys have put in front of them.

We have a HIPE panel of experts, and we will have Doctor Sam Frank, Terry Tempkin, and Lisa Mooney. All experts in HD who can answer the questions that you guys have put in front of them. Of course, they will not, know who's asking these questions, but they have a lot of great answers. Katie and I will also be on the Zoom meeting, if we need to chime in as, caregivers in that perspective.


The outline will be an introduction from both Katie and I from Help 4 HD. We will also have HDYO coming on and they will introduce themselves and the programs they are doing virtually. We will finish the day off with some research updates.


To find out more information about who will be speaking and giving updates, please stay connected with us. You can find us on YouTube, Facebook, and on our website and we will continue to update as the program gets updated. People are confirming as we speak and we just want to make sure that we update you.


I think what we should do is get into some of the questions that are asked during HIPE as far as what we typically get from families. This will just kind of get your guys' minds rolling and start you in your thinking process because we will have a week available for everyone to submit their questions.


Submit a question online: https://www.surveymonkey.com/r/virtualhipe

Register for the May 2, 2020 event: https://www.help4hd.org/events-1/help-4-hd-international-virtual-hipe


Katie Jackson: Katrina, it's so funny. We thought we knew who our research updates were, and right before we got an email, so we had another person add. WAVE pharmaceuticals just added in probably 10 minutes before we even went on here. It's changing, we're getting more, which is great.


A lot of times when we first start this, people are like, well, what would I ask? Katrina and I just wanted to jump on here and talk about some questions. These were actual questions asked by our community. These are from past HIPE days.


One question that was asked was, what happens if something happens to me and I cannot care for my loved one anymore?


Katrina Hamel: Another would be how do I go about taking over finances without my loved one getting upset?


Katie Jackson: One that was asked was, what do I do about my adult at risk children that don't want to talk about HD.


Katrina Hamel: What do you do when your loved one loses their job that they loved?


Katie Jackson: I am a caregiver of my child with JHD and my husband with HD. What would I do if there was a fire in the home about getting them both out in time?

Katrina Hamel: Ideas on how to handle at home, loneliness while loved one is at home while spouse is at work. So just kind of the situation between one being at home and one having to work.


Katie Jackson: What is the best suggestion about telling at risk children that they're at risk and about HD and what is age appropriate?


Katrina Hamel: I get so angry when people stare at my loved one. What should I do? I want to yell at them, but I know that isn't a good idea. Any suggestion for these situations?


Katie Jackson: What do I do if the caregiver needs an emergency service or has to go to the emergency room, and my loved one refuses to go, but they cannot stay alone at home.


Katrina Hamel: I have a child with JHD and I feel bad when I discipline her. What disciplinary things are acceptable when my child is acting up?


These are just a couple of the hundreds of questions that the community has asked over the years. We've been doing this for three years and there's been a lot of repeat questions, but they're not always the same. They're asked from different points of view, different perspectives.


If you or your family member or anyone involved in your care team or your friends have any questions, please be sure to find the link in the description. Ask as many questions as you need to, and we will get them to the experts.


May 2nd virtual HIPE day

You can also go to www.help4hd.org to submit those questions and they will also get to the professionals for May 2nd virtual HIPE day.


Katie Jackson: Like Katrina said get us all your questions. This is anonymous. This is the one time, you don't have to be afraid of asking a question. We're going to ask them for you. So, ask really what you need. They (the panelists) know what they have signed up for. We have told them that we are going to ask hard questions because it is hard navigating our lives with HD and we come up with very challenging stuff put in front of us. Ask the questions. It’s anonymous. No one will know. Like Katrina says, the link will be below in the description.


Until next time, make sure you guys like this video, subscribe below to our channel, and ring the bell for notifications for our next show. Until next time.


Submit a question online: https://www.surveymonkey.com/r/virtualhipe

Register for the May 2, 2020 event: https://www.help4hd.org/events-1/help-4-hd-international-virtual-hipe

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