Hey :) My name is Steffany. I am with Savvy Cooperative, a patient-led organization that bridges gaps between patients, caregivers, and healthcare innovators. We conduct paid research activities, like online interviews, surveys, and more. Transparently, we have never had the opportunity to work in this condition area- where we would normally be able to reach out to our existing community, we cannot in this case. We are hoping to speak with patients diagnosed with Down syndrome and their caregivers. This is worldwide, so anyone can participate. The gig would include a 1 hour live video intervi ..read more

My sister’s daughter (age 22) is a high functioning adult with DS, she has completed high school and is quite well versed with computers and programs like excel, office etc. They live in Middle East and as a society, the opportunities for people with disabilities is quite low. She is now looking for opportunities where her daughter can volunteer her time. It can be to complete tasks for teams through the online mode. Are there any organisation or websites that can provide the opportunity? She has tried organisations from our country of origin (India) but the location is a constraint for them ..read more

Hi, My sister recently gave birth to a beautiful baby boy with Down syndrome. Unfortunately her other half has left the picture. As long as she is comfortable, I would like to try and play a role to support and help him in the world. Conscious he might not have a male role model to help with areas my sister might not be able to. Is there any advice, website you would recommend, thoughts on how I can prepare myself to support him as he grows up. Get an idea what to expect and help him thrive. submitted by /u/Dangerous-Run-3333 [visit reddit] [comments ..read more

Hi everyone....our son is getting ready to turn 1 in early May and my wife is getting down on herself because she feels like we haven't done enough to help him develop. All things considered, I think he doing quite well. While he cannot sit up on his own or fully crawl on his hands and knees yet, he can do an army man crawl and moves pretty well. He has been babbling non-stop for months and months, holds great eye contact, recognizes us, claps his hands and plays well with his toys. We have a nanny/care-giver who just started with him and we hope that 1:1 will help him greatly (he has been in ..read more

My almost 5 year old son with Ds has started to indicate that he has gone to the bathroom and or is going and we are thinking it could be time to get in to potty training with him. Just wondering what tips or tricks anyone of you might have? He picks up on things quickly once he's interested. Maybe it's too soon but thought we could give it a go and see how he does? submitted by /u/iLLamanati11 [visit reddit] [comments ..read more

Hello I am currently 28 years old. My brother with ds (30). He is moderately functioning (can’t live on his own). My parents are both in their sixties and I plan on being the caregiver to him when they pass. My brother means everything to me and have been worrying about him since he is getting older. For a person with Ds he is skinny and has been very healthy is whole life. I was just wondering if anybody knows about medications to start him on to stop the develop of Alzheimer’s in Ds people? I have been having crippling anxiety about him developing it in his 50s or 60s. I just want him to li ..read more

Looking for help in dealing with my daughter’s mother whom she lives with majority of the time. For context, my daughter is 36 & has 2 part-time jobs. She either rides her bike or is provided transportation to them. My daughter is with us every other weekend. At least she used to be. When she is at her mom’s, she mainly stays in her basement watching tv or is on her iPad. Her mom rarely takes her out unless it is shopping or to her sisters. We have spoken to her numerous times about getting her out and being more social. She does do Special Olympics, so there is that. Besides that, she ha ..read more

From the biggest accomplishment to the smallest moment, share a moment of celebration this week! Please remember this is a thread to celebrate, not compare. submitted by /u/AutoModerator [visit reddit] [comments ..read more

submitted by /u/LydiaMMU [visit reddit] [comments ..read more

We are Jack’s Basket, a nonprofit dedicated to supporting families with a new Down syndrome diagnosis, and we want to celebrate your baby! ? Request a complimentary Jack’s Basket full of gifts, resources, love, and connection! You can request a basket up until your baby’s first birthday! ?? Please visit jacksbasket.org to request you basket today! submitted by /u/JacksBaskett [visit reddit] [comments ..read more