How Can You Help?
Finding Therapies and Support Takes a Community Effort.
Our PSMC5 Foundation is all about helping each other as parents in the common goal of supporting our children.
The probability of getting struck by lightning is 1 in 1,000,000 and now through continued research and previous thanks to past donors, it has helped us identify 19 other kids with similar mutations to Ollie & Yoni. So we’re looking at a condition that currently is 1 in 500,000,000. It is certainly under-diagnosed and as genetic testing improves as well as our understand of the proteasomal disorder through this research we are hopeful we may be able to find an easier way to diagnosis and find a treatment.
We realize that you have probably found our website to either help our cause or you may be a parent with a special needs child, or one with another kind of rare gene mutation. Whatever the reason, we hope to connect with you and the community to generate support for our foundation as well as help you on your journey.
Here's a Checklist of How We Can All Help
Step 1: Identify possible genetic issues
Our kids were labeled as autistic, having ADHD, and some other lump sum terms. We knew our kids didn’t fit these standard classifications. So, we dug deeper.
Step 2. Perform a neurological exam
We’re not doctors although we could possibly pass as them after all the specialists we’ve gone to. To fully understand your child’s challenges, it is recommended to perform a full workup to tackle any challenges.
Step 3. Is my child in the right school?
We’ve done the school swap thing. We tried public school and although we were ushered to the exit door for not being the right fit, we used it to our advantage. Finding the proper school and holding your city accountable is a powerful strategy you should uphold.
Step 4. After school programs options
At first, we felt a sense of catch up was needed to get our kids up to speed with more advanced peers. Then, we realized our child is at his own pace. Embrace your child’s hobbies and interests. After all, it will flourish their curiosity, growth, and give them a break from school.
Step 5. Funding
Don’t think you need to pay for everything on your own. There are various ways that your city, state, and insurance may pay for your child’s requirements, conditions, and activities.
Step 6. Volunteer
Join an organization like ours or another one as a parent. Not only will you be supporting a good cause, but you’ll be able to learn more how to advocate for your child by learning from others.
Step 7. Donate
If you believe in a cause, stand behind it and fund it. That way, it will grow, prosper, and benefit those in need. In turn, your positive energy will go a long way.