How do I connect with people to fill the three roles: Receiver, Maker, and Encourager? The most straightforward and organic connections are between people who already know each other—HD support groups, family members, social networks, churches, and friends. Discuss this web site and the Make Life Guide [coming soon]. If you don't know how to find someone, send us an email at info@MakeLifeHD.org. We will try to link HD-affected artistic orphans (i.e. people who feel like they know no creative people) with an artist interested in investing their gifts in this way.
I'm uncomfortable being labeled a Receiver. How can I get around that? HellOOOO! You're dealing with a genetic progressive neurodegenerative disease causing gradual deterioration of movement, cognitive function, emotional control, blurring of social boundaries and inherited in an autosomal dominant pattern! Unless you're dead, you need help. Get over it. So, if you are someone who has Huntington's Disease, a caregiver for someone with HD, a widow or widower of someone who had HD, a family member of someone with HD, or anyone who has been deeply impacted by someone who has HD, you can be a Receiver. There's no shame in accepting a gift, only respect.
Could I really be a Maker? Yes! Every day people make new things: meals, greetings, thanks, emails, flower arrangements, etcetera. None of these things has existed in exactly the same form before. But you probably can make something with more artistic features, too. Think about these examples: a poem, a dramatic monologue, a quilt, a filled-in coloring book page, a hat or other piece of clothing, a dance, a piñata, a mug, a short film, a lolcat, a fireworks display, a cake, a short story, a song, a symphony, a tango, an instrumental solo. What you make is important, but the hope communicated when you give it to someone is even more important. You may also be an experienced or professional artist of some kind. HD communities need you, too...very much. So, if you are someone who has creative gifts of any kind at any level, or you know a person like that, you should explore the possibility of helping someone affected by Huntington's Disease.
Couldn't I be both a Receiver and a Maker? That would be wonderful! Making artistic stuff can benefit the creator just as much as the receiver.
What if the Receiver doesn’t like what the Maker creates? Artistic preferences are very individualized, so this situation is possible. We’ll help to guide participants’ expectations along the way so that the relationship and act of giving take center stage.
Who owns the thing that got made? Can someone make money off of this? Make Life | HD is meant to encourage someone, usually in a warm, familial, organic setting. So we suggest that you don't make it available publicly for a few months after the work was made. The Receiver has the right to decide if and when to show it to others. We also suggest that you don't introduce money into the equation without first filling out lots of legal documents you don't understand.