Most of you know, but some of you are new at following my blog. My sweet Mercy (who will be 2 on Christmas Day) has a large facial hemangioma we have been working to get under control for almost 2 years. Please read about it (and view the photos)
here.
Mercy not only has the hemangioma, but also has some issue with her heart, and other minor things. Our prayer is that these will not effect her in a permanent manner. They have found that some of these children have varying vascular issues. You can read more about PHACE Syndrome
here. A Google Search will get you a lot of information.
Unfortunately there is not a lot of research being done on PHACE Association. This is resulting in grave misunderstanding among the medical community on what causes this, and what the treatment protocol should be.
Due to this, there is currently a petition going on to try to increase funding for research into PHACE Association. Would you mind signing it for my Mercy's sake? We would really appreciate it.
Head over here to sign, if you would like to. I am also posting the whole petition here so you can read it first.
Thank you for your help!
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To: National Institute of Health To: The National Institute of Health
Stephen C. Groft, Pharm.D., Director of Office of rare Diseases, Office of Rare Diseases
National Institutes of Health, 6100 Executive Boulevard, Room 3B01, MSC 7518
Bethesda, Maryland 20892-7518NCI
Elizabeth Read-Connole, Ph.D.
NCI Representative to Office of Rare Diseases Committee Cancer Etiology
Branch, Division of Cancer Biology National Cancer Institute, NIH 6130
Executive
John E. Niederhuber, M.D., Director of the National Cancer Institute (NCI).
NCI Plaza North Room 5016 Bethesda, MD 20892-7398
Sonia I. Skarlatos, Ph.D., FAHA, Acting Director, Division of Cardiovascular Diseases, NHLBI Gene Therapy Coordinator, National Heart, Lung and Blood Institute
Rashmi Gopal-Srivastava, Ph.D.,Office of Rare Diseases, National Institutes of Health 6100 Executive Boulevard, 3B-01, Bethesda, Maryland 20892-7518
J. Fernando Arena, M.D., Ph.D., Division of Clinical and Population Based Studies Center for Scientific, Review, National Institutes of Health
6701 Rockledge Drive Room 3135, MSC 7770 Bethesda, MD 20892-7770
The Hemangioma Investigators Group has formed a consortium to address the need for research into vascular anomalies and PHACE Syndrome. This petition is in reference to RFA for the Vascular Anomalies Rare Disease Clinical Research Network
As a community of patients and families and friends who are living with vascular anomalies/PHACE Syndrome we are appealing to you to consider this application favorably. There is much to be learned about these diseases and the only way that will be accomplished is through research and trials.
While vascular anomalies are not new, the diagnosis of PHACE Syndrome was first reported in 1996. PHACE Syndrome is a rare disorder that requires the collaboration of medical disciplines including, cardiology, dermatology, hematology, oncology neurology, radiology, and surgery. There is a wide spectrum of symptoms and complications involved in vascular anomalies/PHACE Syndrome. PHACE Syndrome and the entire spectrum of vascular anomalies have been inappropriately diagnosed and managed due to an inability of the medical disciplines to collaborate on diagnosis and treatment.
Since the first reports of PHACE Syndrome appeared in the literature, there has been an increased interest by physicians and scientist. Medical Institutions across the country have recognized the need for multidisciplinary teams to manage patients and have supported research targeted at developing treatments. Unfortunately there is no funding for vascular anomaly research. The lack of funding for vascular anomalies has limited research and this is directly affecting how the growing number of diagnosed patients are managed each year. Patients and families are left with little information or understanding of the long term implications and treatments of PHACE Syndrome and other vascular anomalies.
NIH Funding for the proposed consortium would help provide desperately needed knowledge and understanding to disorders filled with so many unknowns. Our hope is that by finding solutions to complex vascular anomalies like PHACE Syndrome, there will be applicable treatments and insight into the more common vascular anomalies like hemangioma and vascular malformations.
Our patient/family led groups as well as patient advocacy organizations have been pleased with the representation within this consortium. There are doctors from many different specialties and many different medical institutions working together for one common goal. These dedicated researchers and scientists have been involved in every aspect of managing vascular anomalies/PHACE syndrome and are committed to moving forward. They have created an innovative proposal and our groups enthusiastically approve of their efforts.
By signing this petition we, as a community of patients, family members and friends show our support for requested funding by the NIH.
Sincerely,
The Undersigned
~~~~~~~~~~~~~~~~~~~
Again, here is the place to sign. Thanks for taking the couple minutes to do this for us!
I had suggested to Josiah that a great science fair project would be to test the saturation point of each kind of diaper to see which is really the most cost efficient (the cheaper ones need to be changed more often, so I have always wondered...) but he told me he could never hold his head up in the local homeschool group if he did that. He would be too embarrassed. So funny!
We also picked up our cow from the butcher this morning and filled a 16.7 cu. ft. upright freezer with all sorts of roasts, ribs, and steaks. We had to put an additional 38 additional pounds of ground beef in our other freezer.
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