Angels Week Off2-1

ANGEL’S WEEK OFF – Vacation Giveaway

Since our daughter’s Angelman Syndrome diagnosis in 2007, my wife and I have embraced the community of people who share our journey. We’ve been fortunate to have had helping hands around us when we needed them. We’ve tried to be those hands to others whenever and wherever we could. The road is difficult for caregivers of people with special needs …and it never really ends.

AWF logoIn 2010, we started our own non-profit 501c3, The Angel Wings Foundation. The truth is we held and hosted so many benefits and contributed to so many other non-profits we simply needed a secure and transparent place for money to go while we decided how to direct it. The first few Bella Bashes were accounting nightmares. Money was changing hands and we wanted people to know where it was going and how it was being used. I have literally had people walk up to me after a concert and just hand me a wad of cash to apply toward “Angelman Syndrome”. I don’t like having those kinds of grey areas in my life.

Our little foundation doesn’t take in a lot of money and we don’t actively raise a lot of money. We do a few benefits a year and we try to keep our support as local as possible. We’ve funded therapy programs at the Vanderbilt Kennedy Center. We’ve helped Tennessee residents with IEPs and other services. We’ve made awareness videos and contributed to all the other Angelman Syndrome related foundations. We attend every Angelman function we can get to and we help wherever we can.

In the coming years, we intend on refining our focus and expanding our reach. But we still think of ourselves as just here to help. The larger Angelman foundations are doing some amazing things and breaking some much anticipated new ground. We are cheering them on whole heartedly. But in the meantime, while we all wait on the next exciting breakthrough or therapy, and while we continually connect with each other to discuss everything from recipes to bedtimes, time slips through our fingers and fatigue sets in. Days turn into months …then into years. Sometimes, we as parents just need a break. Yolanda and I were discussing this very thing this summer when we kind of hit on an idea …

We decided to offer something through our foundation that might be just the ticket for someone. We’re giving away what we’re calling an Angel’s Week Off. We’re giving away a vacation, basically. Three days and three nights in San Francisco, at a five-star hotel. Then, three days and three nights at a music festival in Napa Valley. It’s called “Live In The Vineyard” and it’s three days and nights of live music, amazing food and wine tastings. Former artists who’ve been at this event include, Alanis Morisette, Lenny Kravits, Daughtry, James Blunt, Zack Brown Band, Plain White T’s, Colby Calait, and the list goes on and on …and on. The event is spectacular and we can think of nothing better than the Napa Valley, music and world class wine to give two of our fellow beleaguered Angelman parents a chance to exhale and recharge.

Many Angelman parents have never even been away from their Angels for one night. We understand how difficult it might be for some to trust a third party with the enormous responsibility of caring for their Angel for a solid week. So, we’re also providing a male and female caregiving team, who are certified special needs caregivers and who have experience with caring for people with Angelman Syndrome, for the entire week as a help team to whomever the parents designate as their caregiver for the week. We want it to be a week off for the Angel too. The team will take the Angel to the park or the zoo or a museum, each of the seven days. An activity for each day will be chosen in coordination with the parents and the parents’ designated caregiver ahead of time. Our team will be there to help in every way possible. There will be skype and face time available any point the parents want to check in. We want them to feel good about the hands their Angel is in. We want them to relax. We want the Angel to have a great time as well.

We hope to make this a biannual thing eventually or (my personal goal) make it a monthly thing. But this year we’ll start with one family and see how it goes. Yolanda and I don’t want to be involved in choosing the family, so we’re making it a contest of sorts through the new publication Angelman Today. We’re asking those interested in applying to write a five hundred word (or less) essay on their Angelman Journey. We want to hear your story. We’re asking that all applicants have an Angel over the age of five-years-old. The first 50 will be accepted. Then a panel made up of one of our board members, a representative from Special Olympics, a representative from Best Buddies, a representative from Make A Wish and Lizzie Sordia, managing editor of Angelman Today, will decide on the winning applicant. The Live In The Vineyard event takes place twice a year.  Once in April and once in November. We will coordinate with the winning family as to which week they’d like to do. Then ..the fun begins.  regie
We appreciate Angelman Today for helping us coordinate the contest. We believe it’s going to be a wonderful experience for one deserving family. Our prayer is that in the future we can make something like this happen for every Angelman family.

You can enter your essay by emailing us at:
angelsweekoff@angelmantoday.com