Diagnosis: aHUS (Atypical hemolytic uremic syndrome)
Diagnosis: Ehlers-Danlos Syndrome type 9 (Occipital Horn 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.
We are so thrilled and honored to have another RARE portrait gallery up! Recursion Pharmaceuticals has installed portraits of 18 RARE and Undiagnosed Angels in their new workspace. Employees wanted this installation to remind them everyday why they are doing what they are doing and who they are doing it for! It is motivating and inspiring for them and a goal achieved for us! We want to get these beautiful faces in front of those who can make a difference for them. Their portraits are a reminder of who is living with rare and undiagnosed disorders-that they are beautiful, full of personality, love and they deserve the best quality of life possible.
Rare and Undiagnosed families were invited to attend an official unveiling of this gallery and share their stories with Recursion as well as mingle with other families in the community. This was a great event and we are so grateful for their hospitality.
“We combine innovative biological science with machine learning and deep learning to discover new therapeutic opportunities for rare genetic diseases – or any disease that we can model in cells. Founded in 2013, we are making strides towards our ambitious goal of treating 100 diseases in just 10 years.” http://www.recursionpharma.com/