Hannah's "HOPE" bracelets...
When our daughter was diagnosed with PHACE Syndrome and Moyamoya disease, we began to seek out ways to support sick children and their families. In 2011 Hannah began receiving treatment for PHACE Syndrome at Children's Hospital of Wisconsin.
We were fortunate to be able to stay at the Ronald McDonald House in Milwaukee. After that stay, we began collecting pull tabs for The Ronald McDonald House Charities. This project initially led to creating and selling bracelets using the pull tabs. 100% of the sale of these bracelets and her other HOPE products are donated to the charities listed below. It is our "HOPE" that one day there will be a cure for Moyamoya, PHACE Syndrome, and other diseases that are affecting so many children and adults. Hannah personalizes each of her "HOPE" products with a special pink or blue tab which represents her and other people dealing with PHACE Syndrome, Moyamoya, and many other childhood diseases. Please continue to save your pulltabs! Since 2012, Hannah, her school, her friends and family have collected almost 2,000,000 pulltabs for The Ronald McDonald House! She's also raised over $6,000 for these charities!
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Ronald McDonald House.
It’s something we see every day – children healing because they’re surrounded by their families. And while RMHC may not be able to make the medicine taste better or erase the pain of a much-needed treatment, we can help lessen the burden for nearly nine million families each and every year.
Since 1974, our network of local Chapters have been making children happier and healthier by keeping families together – giving them a place to rest and refresh. A place that feels like home. These programs, tailored to meet the urgent needs of each community, can now be found in more than 62 countries and regions across the globe.
PHACE Syndrome is the uncommon association between large infantile hemangiomas, usually of the face, and birth defects of the brain, heart, eyes, skin and/or arteries. It is an acronym that stands for the medical names of the parts of the body it often impacts:
P – Posterior fossa abnormalities and other structural brain abnormalities
H – Hemangioma(s) of the cervical facial region
A – Arterial cerebrovascular anomalies
C – Cardiac defects, aortic coarctation and other aortic abnormalities
E – Eye anomalies
If you would like to support PHACE Syndrome research with a financial gift, please click on the link below and be sure to designate your gift to the "International PHACE Syndrome Registry" or you can send a check or money order to the following address:
Children's Hospital of Wisconsin PHACE Syndrome Registry
8915 W. Connell Ave
P.O. Box 1997
Milwaukee, WI 53226
Moyamoya disease is a rare condition (one in about two million get it), and is defined as the progressive narrowing of the arteries to the brain, which causes the vessels in the brain to close off. The result of this can be very painful headaches, transient ischemic attacks (or mini-strokes), as well as regular strokes. The disease, if not diagnosed, can be fatal.
The name Moyamoya means “puff of smoke” in Japanese, and is used because of the disease’s resemblance to a puff of smoke on X-rays.
If you would like to support Moyamoya research with a financial gift, please click on the link below and be sure to designate your gift to the "Moyamoya Research Fund" or you can send a check or money order to the following address:
Boston Children's Hospital
Moyamoya Research Fund
300 Longwood Avenue; Hunnewell 2
Boston, Massachusetts 02115