February 2019 Issue
I am delighted to join an organization with such committed and passionate volunteers and leaders. I look forward to learning more about you and your families, and working together to make sure that the community we serve has the support and resources they need to live healthy and meaningful lives.
Priority one as we work to improve technology and our infrastructure is an update of the website. Are you a tech guru, or perhaps a web designer? The last time you accessed the site did you find yourself muttering about ways it could be improved in design, navigation or content? If so, we would love to hear from you. Our site update workgroup is considering all ideas, big and small. Send your thoughts to firstname.lastname@example.org and be sure to put “Website” in the subject line. Thanks!
Miracle Flights was founded in 1985 as a nonprofit health and welfare flight organization that provides children and their families free flights to distant, specialized care and valuable second opinions. Their mission is to “provide free commercial flights to those in need of life-changing medical care not found in their local communities.” In the past, they primarily served children, but they have opened up their services; in fact, 25 percent of their flights today serve adults. Additional details on their services include:
Coverage: Miracle Flights can provide travel for treatment, surgery and clinical studies. In addition, they provide flights for travel to pick up service dogs, since they realize that these companions can be a vital addition to a health program.
Eligibility: Low-to middle income families. Call for a consultation to see if you’re likely to qualify before taking the time to fill out the form. Who can travel? If the patient is a child, up to two caregivers may also travel on the flight. If the patient is an adult, he or she can be accompanied by one caregiver.
Miracle Flights appreciates two-four weeks lead time, but they understand that emergencies happen and they make exceptions/accommodations. They recommend contacting them to request exceptions.
The great news is that the organization does not limit how often their services can be used per year and families can apply for long or shorter trips. Miracle Flights knows that a five hour drive can be taxing, so they encourage both cross country and in-state trip bookings. They are also able to work with any airline so they can get the patient to the the airport that works best for them.
If you’re not sure if your situation or finances would qualify for a flight, give them a call and ask--they are a very friendly and engaging organization! “Zack’s” parents provided the following personal recommendation:
The specialized cardiac team at Boston Children’s hospital provides Zack with the ongoing and complex heart treatment he needs. He was last flown by Miracle Flights to be evaluated by a genetic specialist at Massachusetts General Children’s Hospital at the beginning of October. We are lucky for Zach to see a geneticist who specializes in Williams Syndrome. The generosity of Miracle Flights allows Zack to be treated by doctors who understand and can treat the many issues associated with Williams Syndrome, and we are so appreciative!
Miracle flights is an amazing support for our family. We appreciate the organization and everything it does to help children and families. The service that Miracle Flights provides eases the financial burden and reduces the stress of multiple medical trips. Despite his health challenges, Zachary is growing and learning every day. Thank you for supporting our family.
Williams Syndrome Awareness Month
The WSA calendar is beginning to fill with walks and other awareness activities. You can join the excitement and schedule an event for May or later this year (any time is a good time for awareness) to celebrate awareness!
#Walk4Williams events are not only wonderful for increased awareness, the are also crucial fundraisers that make programs, research and events possible for families affected by Williams syndrome. WSA is entering its tenth year of awareness activities and each year is getting better! Thank you so much for all you do to make this happen! If you would like to attend, host an event or start a fundraiser, Click to find out how.
This has been a challenging winter for many of our friends around the country, so...let's think summer! And what's more "summer" than camp? Registration is now open for our camps at Camp Nissokone in Oscoda, MI, which are the highlight of the year for many elementary-aged children and teens, and we hope your child can join us this year!
Whispering Trails Therapeutic Camp Experience for ages 6-12: July 21 - 25, 2019. Children attend with one adult caregiver. Sessions are led by therapy professionals (MT, OT, PT, etc) and include singing, dancing, musical instruments, arts and crafts, and motor activities, plus swimming, boating, outdoor games, campfires, karaoke and entertainment. Parents enjoy optional educational sessions, networking opportunities, and some R&R while the kids are in sessions.
Visit our camp page for more information, including links to partner camps.