Diagnosis: aHUS (Atypical hemolytic uremic syndrome)
A HUGE thank you to everyone who participated and supported Aware of Angels during this fundraiser and all other times! xoxo
Calling on everyone!! 🙂 We have officially started a Crowdrise fundraiser for the next 30 days. We have families and children in over 15 united states and 3 countries that want us to come out for a photography session and to participate in our global awareness project this year! This will be somewhat low-key on our part, mostly due volunteer availability for posting and sharing and this is why we need your help! We need to raise a lot of funds!! This is not just for individuals, we would love corporate sponsorship as well. Funds do not have to be sent through crowdrise, feel free to contact us for another option. We are a registered 501(c)3 nonprofit organization so your donations may be tax deductible. Please consider donating to a very worthy cause and sharing about the fundraiser & what it means to you. These children we photograph and share about are either undiagnosed or have a rare medical condition. We need to raise awareness for them as a beautiful individual as well as their diagnosis (or the need for one). Awareness will make connections for these families on a personal level as well as with in the medical industry. To read more about this, here is the link for the fundraiser: https://www.crowdrise.com/o/en/team/raising-awareness-and-providing-memories-for-children-with-rare-medical-conditions and here is the link for the crowdrise AOA page: https://www.crowdrise.com/aware-of-angels Thank you!! xo
Both pages have beautiful video’s of our families and a special thanks to Joe Rawlins and Matt Eastin for creating them for us.
Ava: 5 years old
Diagnosis: 1P36 Chromosome Deletion Syndrome
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We are thrilled to be collaborating with the Rare Genomes Project! If you are a patient or parent who had severe symptoms before the age of 13 I highly encourage you to reach out to them for a genetic testing opportunity.
“The Rare Genomes Project aims to increase rare and undiagnosed families’ access to genomic research, empowering patients to directly accelerate the pace of rare disease diagnosis. This project was designed to be a direct partnership between researchers and patients, so we can better understand their conditions.”
Who should apply to participate?
Patients and families with a rare and genetically undiagnosed condition who:
- Understand English
- Live in the United States
- Had an appearance of severe symptoms before the age of 13
- Are currently under the care of a doctor that is helping to understand the cause of the patient’s condition
The Rare Genomes Project is being launched by researchers Daniel MacArthur and Heidi Rehm at The Broad Institute of MIT and Harvard, in collaboration with Massachusetts General Hospital and Brigham and Women’s Hospital. All genomic sequencing is performed at The Broad Institute’s Genomics Platform.
Our team is made up of scientists, clinicians, genetic counselors, coordinators, and patient advocates.
There are no costs to you to participate in this study. Funding for this project is currently provided by the National Institutes of Health (NIH) and The Broad Institute of MIT and Harvard.
Everything you need to participate – including the cost of the sample collection kit, sample collection at Quest Diagnostics, genomic sequencing, and clinical confirmatory genetic testing will be covered by us.
Visit their website for more information, application and contact information: https://raregenomes.org/home
Many of our beautiful Aware of Angels portraits are featured on their website. Thank you Rare Genomes for this opportunity!