Spokane Smiles Parent Action Committee Meeting  Sept. 13, 2007

Introduction of Kris Christensen, Communications and Program Coordinator with the March of Dimes.

Media:  Article in the paper, KHQ slot and working on KXLY.  Can we get national coverage?  Working on radio advertising in Seattle.  March of Dimes is going to do a statewide informational.  Kris will contact Dan Kleckner regarding getting on the Help Center during the news cast.  Lynn will contact KREM and Dawn Picken. 

Letters, e-mails and phone calls targeting specific people who have been receptive.  Children’s Alliance, Sarah Cherin, Lobbyist.  E-mails to her will need to be made to see that this is a statewide program because the Children’s Alliance can only take on causes that are statewide.   Senator Lisa Brown and Chris Marr – Lisa Brown said that she would contact the governor on our behalf.  Push contacting her whether in district or not to make our voices heard.  Senator Marr mentioned all of the letters he received.  Chris Marr’s asst. Barb is good to work with.  Tim Ormsby, Chris and Lisa met and about our issue.  She said they wanted us to know that they are working on this and want to come through with the money.  Contact them and thank them for their support of our cause. Specifically thank them for writing to the Department of Health on our behalf. Lisa Brown is a woman of her word.  You need to educate them first.

Hints for writing a good letter:

First paragraph needs to be simple and catch your attention.  Mention that you are a constituent and that you voted for them if that is the case.  Talk about specific dates.  Talk about statistics.  Spokane has at least twice national average of cleft births.  Go to the website and you can find all of the hints including hints for your friends and families to write on your behalf.

Press release

Jonelle Alicia from the Spokesman.  She wanted to know who was supportive (ie Brown, Marr).  Kari spoke to her, but did not give specifics so that we do not alienate anyone.  Looking for Video of problem feeding or cleaning the Lathum appliance.  We need to communicate the importance of how this service relates to all kids with clefts.  The hospitals are not equipped to take over the job of the team.  They don’t have the feeding specialists or the care that they need.  You cannot make kids eat or drink.  Ask your providers to write letters.  Ask if we can keep copies of them.  Send copies of our letters to Kris Christensen at the March of Dimes. kchristensen@marchofdimes.com  Providers are still giving the option of aborting perfectly healthy children with clefts. 

Kari and Kris are trying to set up a meeting with Governor Gregoire on Tues. Sept. 18 here in Spokane.  Christina is the health policy person at the governor’s office.  More info will be published on the web and phone calls will be made to everyone who has come to meetings or is in the Spokane Smiles database if we get to see the Gov.  There is no way to notify all families due to not being able to use the Children’s with Special Health Care Needs database. 

Lori Ullman made labels to send with the letters and flyers to hand out asking for help.  Please take them to hand out to professionals, churches etc.

Easter Seals is willing to do an e-mail blast for us.  Chris will also contact PAVE to help and ARC of Spokane including their parent to parent group. 

State Director of March of Dimes will write an OP ED piece.

Brochures are being made by the stakeholders including facts and figures and pictures for the different procedures and surgeries. Julie and Kari will be adding GRAPHIC pictures to add to the brochure.  EVERYONE send GRAPHIC (the more graphic the better) pictures of your children going through various treatments.  If you have short video clips, send them too.  Send to karialmeida@spokanesmilesonline.com .  If unable to send via email, contact Kari.

Phone calls- Start making more of them. Call YOUR legislator, Sen. Chris Marr, Sen. Lisa Brown, Sarah Cherin and the Governor (all links on the links page of the website).  We only have until OCTOBER to get the Spokane Board of Health’s portion of the funding.  If we don’t have the state money, we will not get the local money.