Blog post

GeneFO A resource for rare genetics

Hello everyone GeneFo is a resource I think many of you will find helpful. Last week I came across a new free patient  crowdsourcing platform called GeneFo for people affected by Genetic conditions. The platform was designed by Stanford-trained medical geneticist, Dr. Yael Wilnai who came up with the idea when working with patients/caregivers and… Continue reading GeneFO A resource for rare genetics

Blog post · Cp

cerebral palsy and 22q11.2 deletion

  Bella has a mild from of cp on top of having 22q11.2 deletion syndrome. I don’t blog much about her having cp as it’s so mild but she does wear leg braces at night and take backflen for leg pains. Today she ran 21 laps for fun run. I couldn’t be more proud of… Continue reading cerebral palsy and 22q11.2 deletion

Blog post · Caregiving · self care · wellness

Self care while caregiving

Still here as seen in previous posts. I have been doing self care. As a caregiver we can often over look the burn out factor. I became burnt out friends! that is why there have been very few blog posts. I received all of your encouraging words and emails, as I reply to each one… Continue reading Self care while caregiving

Blog post

Meet and Greet with Anne a book blogger.

Hello everyone. I am back from the summer blogging break . I am starting out with a meet and greet as many of you love meeting other people who I interview you. Let me introduce you to Anne. Meet Anne who is a book blogger from Taipei, Taiwan. You might think  I only meet people… Continue reading Meet and Greet with Anne a book blogger.