The presenter for Patient Power had a great power point and videos. Patient Power is an outlet where PKU people can post links, videos, share menus & recipes. The other great thing about this site is that doctors and dietitians post videos about PKU and have question & answer segments. It's almost like it's own tv show broad casted on the web. The website is sponsored by an educational grant from BioMarin. Another great thing about this site is that it offers information on many medical topics, not just PKU. My nephew has hypoplastic left heart syndrome (hlhs), I looked up his condition and found a lot of relevant info. So, this site is pretty broad but definitely has a lot of info for PKU.
Taste Connections is a site that was started by Malathy Ramenujam. Her son has homocystinuria, which is also a metabolic disorder that requires a special diet. Malathy's son is a picky eater and she found it was very difficult to create foods that would satisfy his hunger and pickiness. Malathy returned to college and received her bachelor's degree in science and chemistry and her master's degree in Nutritional Science. She now creates low protein foods and recipes that are geared towards PKU. Malathy said that if the recipe takes more than 15 minutes then she doesn't make it. So all of her recipes take 15 minutes or less! Taste Connections posts all of their recipes on their website and also sells low protein packaged foods. The dietitians from UIC all had excellent comments about Malathy, Taste Connections, and her cooking. Even some of the other vendors mentioned Malathy and her great cooking. She was the featured cook of the day and her food tasted great. (Last year, they had a different cook and he scared me away from PKU food- disgusting!)
There was also a presentation by Jeffrey Lewis who is a spokesperson for the Heinz Family Philanthropy. He spoke about legislation that is trying to be passed nationally in regards to health care- specifically PKU and the need for "medical" foods to be covered. He also spoke about Illinois and what we can do to try to get something passed for our state. All of his presentation, talking points, ideas, and sample letters will be available on the IL PKU site in about a week. He suggested that everyone start locally and worry about the national problem later. Here is what I got from his presentation:
1. Write a letter to your representatives- they probably won't read it nor respond to it!
2. Call 3 weeks later, talk to one of the employees of the representative, mention your letter and that you would like to know the representative's view- the employee won't know what you're talking about!
3. Tell the employee that you will give the representative another week and that you'll call back
4. Call 1 week later and repeat what you previously said- the employee will probably still be confused!
5. Write a letter to the local newspaper (letter to the editor section) and mention your concerns and that you have been patiently trying to get in contact with your representative for over a month and that you wonder why your representative would not want to hear from you, a registered voter!--This will get their attention and you will probably hear from the representative (personally) within a week!
6. Meet with the representative and have 2-3 specific points that you would like to talk about
7. Have facts- if health care is NOT sufficient for PKU patients...this will happen and the state will spend this much money- if health care IS sufficient for PKU patients...this will happen and the state will spend this much money
8. Bottom line- the state will spend billions less on PKU patients if sufficient health care IS provided
9. Mention that you would be willing to help during re-election campaigns-- the money that a representative receives from insurance companies is a large amount, but the time and effort that volunteers put in is immeasurable (the money can only do so much, representatives have to have people to do the grunt work)
*Maybe even find out how much money the representative received from businesses- public knowledge*
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