I believe in continuity of care. I believe in advocating for all children, and I believe there is no need for justification when it comes to finding a solution on how to manage the healthcare needs of our children. I believe in networking.
Thus, you will find with me – that I’m continually working with different organizations – in an effort to help bridge the gap between healthcare initiatives and the needs of the undiagnosed – and the diagnosed in the rare disease community (obviously, with an emphasis on Russell-Silver Syndrome <wink>). For example, I’m headed to D.C. today to meet with The Oley Foundation President and representatives for the DDNC Policy Forum – which will be occurring on Sunday and Monday of this week. (DDNC – Digestive Disease National Coalition)
Now, you probably ask – why am I involved in an organization that focuses on digestive disease alone? Well, one misunderstood characteristic of Russell-Silver Syndrome – is the continuous diagnosis of gut dysmotility, reflux and need for g-tubes. There has not been significant research on “why” (obviously due to its genetic anomoly) these children suffer from existing epidemiology on poor emptying.
But, again – it’s about networking. The Oley Foundation focuses on these types of digestive diseases and supports patients with enteral feedings. What better way for me to “speak” to others about the need for enteral nutrition for our RSS children? What better way to communicate the need for appropriate nutrition coverage from health care companies for our children and the need for mirilax and further studies to understand why “our children are not hungry”?
Networking is also a way to understand “other’s issues……sometimes we feel as if we are “all alone” in the world of RSS. But, there are so many others out there – that can relate to us in some form or fashion about our misunderstood diagnoses. And what better way for me to continue my advocacy passion – to learn how to better advocate by attending these types of policy forums – to help further our own awareness on how to tackle these issues “head on”.
I’ll be sure to post an update on my return! I’m so EXCITED!!!