We’ve noticed an increase in Jake’s strength and curiosity this past month. He’s keeping us on our toes as he is interested in every item in his surroundings. He’s able to get from one item that he’s not allowed to have to another faster than us when he’s in his feeder seat. He’s very curious to learn how to make everything in his environment work, (the broom, our shoes, the plants etc). He’s not only broken all of the baby locks on the kitchen cabinets, but now he is forcefully pulling the cabinet doors off of the hinges.

Our trip to Philadelphia for the CureCMD Family Conference was far more than a success. Whatever we could've imagined it to be, it was a million times better. We were able to meet approximately 40 other families who are affected by CMD. Families came from as far as Australia and Ireland. We gained a lot of knowledge about CMD and about Jake as an individual. We met with doctors who are the world leaders in CMD research to potentially diagnose Jake with a known subtype. This would enable him to be a candidate for gene therapy or any treatment if such an event were to happen. Right now, there is no hope for gene therapy as we have not identified the gene that is mutated. They are able to review Jake’s case in a more detailed fashion. The doctors were amazing and we have sent them additional information that they will review and will continue to monitor Jake for the remainder of his life. CureCMD is one of the greatest things that has happened in Jake's short time here.

While at the conference, we learned that a group of parents are running the New Jersey half marathon next year to raise money to help fund treatment and find a cure. Jake’s mom has signed up to run in this event. We plan to start fundraising at the first of the year. We’ll update you more as the event gets closer.

2 Minutes and $0.44 Cents
There’s another easy way for you to help Jake, just call and request coupons. Pediasure costs $10 per 6 pack and Jake drinks that much every day. You can call the manufacturer once per month and request coupons. Simply give them your name and address and they will send you $4 worth of coupons every month. It takes two minutes and then you can mail them to us. Just let us know if you’d like a monthly reminder, we’d be happy to help. ;-) Pediasure phone number: 1-800-227-5767, press product info. You can call Monday - Friday, 8:30 AM to 5 PM EST.

Thanks for taking time out of your busy day to keep up on our little man. The support from friends, family and the community means the world to us. We’d also like to extend a special thank you to Jessica. Jessica was Jake’s “buddy” for the weekend in Philly. CureCMD partnered with Temple University to provide students to assist with caregiving. Without her, we would not have been able to gain so much from the CureCMD Family conference.