By Regie Hamm, Founder of the Angel Wings Foundation
ANGELS WEEK OFF!
Last year, the Angel Wings Foundation hit upon a novel idea. How about giving someone a vacation? Someone who could really use it …someone who deserves it …someone who might actually need it to re-set their lives. Well, we did just that and it worked out better than we could’ve ever imagined.
So this year we’re doing it again! One deserving Angelman family will win an all expense paid vacation to a music and wine event in Napa, California called “Live In The Vinyard.”
We realize that this isn’t scientific research or new breakthrough therapy techniques or an awareness campaign. All of those things are certainly vital and crucial to our collective journey as Angelman parents. We cheer them on and support them wholeheartedly. But we at the Angel Wings Foundation want to wrap our arms around the Angelman community and give hugs wherever and whenever we can. We know how fatiguing constant caregiving can be. We also know how isolating it can be for the Angel to only see the same people day in and day out. So this “Angel Week Off” is just as much for the Angels as it is for the parents.
We will send in a male and female caregiver to the family’s home to give the Angel a week off as well. Activities will be planned every day that don’t include mom and dad. After all, everybody needs a break from mom and dad sometimes. Besides, mom and dad will be getting a massage or golfing or horseback riding or drinking wine and listening to music somewhere in Northern California!
So here’s what you do …write an essay (500 words or less) describing your Angelman journey. We all have one and they are all deserving of a great vacation. But we can only do one at a time right now …sorry. An all-star panel of judges will read the entries and narrow them down to a top 5. The they will re-read them and ONE family will win the vacation.
Email your essay to: AngelsWeekOff@angelmantoday.com
The panel consists of people from Make-A-Wish, Best Buddies, Special Olympics, Angelman Today and one board member from the Angel Wings Foundation. I don’t read them. I just get to call you and tell you you’ve won …I love that part.
All entries must be in by Thanksgiving Day, 2015. A winner will be chosen and announced on Christmas Eve …what a great Christmas gift! Then, we will start making arrangements for the vacation that will take place in April of 2016. A family member or designated care giver (in charge) must be present with our caregivers. So keep that part in mind. Safety first!
Last year’s winners, Mary and Rory, were so moved by the experience they have asked if they can donate to this year’s winner. I think that speaks for itself. They sent this video to encourage everyone to enter.
Hopefully one day, we’ll be able to do this many times a year. But for this year, we can’t wait to read the entries and award some amazing Angel family a break and a time they will never forget.
We love you all. Now get to writing!
Angels Week Off Winners!
In January, we launched the Angel Week Off contest. We received two dozen stories …all worthy. The Angel Week Off contest essays left everyone who read them in tears and with a greater appreciation for what it takes to be an “Angel parent.” Angel parents are physically strong, emotionally tough and mentally focused …yet they NEVER feel like it. Everyone of these essays proved that again and again.
The screening process was difficult and heartbreaking. The all-star panel included the middle Tennessee representatives of Special Olympics, Best Buddies and the Make-A-Wish Foundation. Everyone on that panel wanted to give all the contestants a week off. Maybe one day, in the not-so-distant future, we’ll be able to do that. But for now, there was a standout story that moved everyone of the panelists …without exception.
The story that captured the hearts of everyone is filled with drama, heartbreak, pain and redemption …as is every Angelman story. It includes an abandoned Angel (something I know a little bit about) and two unsuspecting, “ordinary” people who were about to become extraordinary.
Their week off will begin in three weeks and will start with three days and nights in San Francisco (doing or NOT doing whatever they want), followed by three amazing days in Napa Valley. They’ll dine on world class cuisine, drink some of the best wine on the planet and be serenaded by the likes of Colby Calait and Sarah McLachlan.
It’s our honor at the Angel Wings Foundation to provide this much needed respite for these two very deserving people. We truly love our Angelman family and this is just one small way we can give back to them. We extend our unwavering support to everyone who entered an essay. You are all so deserving and we hope to send more of you on more great getaways in the future.
I would personally like to thank Lizzie Sordia and the Angelman Today publication for running and managing the contest, as well as Beth Torres (Make-A-Wish Foundation), Beth Tegarden (Special Olympics), Anneliese Baron (Best Buddies) and our own Brian Ladd (Angel Wings Foundation). Your time and attention is so appreciated.
So, without further adieu …cheers, Mary and Rory! Here’s to the best vacation ever!
To Read Mary and Rory’s story, click the link below:
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.
In 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.
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:
The True Story of Shattered Dreams and Sweet Redemption that Inspired the American Idol Song Time Of My Life.
Maybe you have to lose everything you really want, to ﬁnd out what you really need. Maybe a song can change the world…or at least a small corner of it. Maybe life really is more beautiful than any of us could ever imagine, and in rare moments, God pulls back the curtain and whispers in your ear, “See…It’s all going to be ok…” -Regie Hamm
Calling on the Angelman Community!
Here is an amazing opportunity to be a part of something so wonderful that will help raise awareness and share Angelman Syndrome with the WORLD! Join us in supporting a documentary of ‘A True Story of shattered dreams and sweet redemption that inspired the American Idol song Time of My Life’ By Regie Hamm