May 11, 2010

Ask Congress to Approve Critical 2011 Funding for IRSF!

The International Rett Syndrome Foundation would like to thank each of you for showing your support at the hill on Wednesday, May 12th! As you know, the IRSF will appear before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies where we have been invited to present testimony regarding the requested $500,000 from the Center of Disease Control and Prevention (CDC) to support education, awareness and outreach for patients, health professionals and the public regarding Rett syndrome. This funding will help in establishing the foundation required to accelerate treatments of this debilitating brain disorder that is often misdiagnosed.

Please meet in the Longworth Cafeteria between 8:00 and 8:15 a.m. There will be an IRSF table set up with informational materials and people to help you with any questions you might have. If you need any assistance on Wednesday please contact Advocacy Day 2011 Volunteer Shawn Mansfield at 703-507-4756.

Please be sure to show support and represent IRSF with any awareness items you may have (purple bracelets, lapel ribbon pins, t-shirts, etc.). If your daughters are not attending, please bring a picture of her to reference as they are advocating our cause. We encourage families to bring cameras to take pictures throughout the day and then send them to IRSF as documentation of the efforts made that day.

Below you will find a list of the meetings that the IRSF has pre-scheduled. The majority of these meetings are open to anyone from that state to attend if you so desire. If you plan to schedule meetings on your own you should contact your senator or congressman to arrange a meeting. If you are unavailable, you should ask to meet with those officials Health Aides as they will be able to meet with them as well.

All Families: The Public Testimony before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies will take place between 2 and 4:30 p.m. in Room 2358-C of the Rayburn House Office Building. Though we cannot guarantee admittance as the capacity is unknown and the hearing is open to anyone who would like to come, IRSF would like to encourage you to attend if possible. People are hardly ever turned away but it is a possibility. They will do their best to squeeze as many people into that room as capacity will allow.

Texas Families: IRSF has set up meeting a meeting at 8:50 a.m. with Hon. Chet Edwards in room 2369 of the Rayburn Building as well as a meeting with Hon. Pete Sessions at 10:15 a.m. located in Room 2233 of the Rayburn Building. There will also be a meeting at 3:00 p.m. with Hon. Kevin Brady in room 301 of the Cannon HOB. All of these meetings are open to all TX families.

Minnesota Families: There will be a meeting with Sen. John Cornyn at 11:00 a.m. room 517 of the Hart Building. This is open to all MN families. Please feel free to attend if possible.

Maryland Families: There will be a meeting with Steny Hoyer at 4:45 is open to all MD families. We would like as many people present as possible. This meeting will be more of a pleasurable photo opportunity with Rett syndrome’s greatest champion in congress. Steny Hoyer has been such a great advocate for Rett syndrome thus making this a great time to pay respect to the opportunities that Steny Hoyer has helped us to obtain.

Click here for additional information.

Directions/Parking: There are various parking spaces nearby that are available to the public. Union station is the closest parking; however, it will still require a cab to Longworth. You could also use the Metro if possible – South Capitol stop is a block from Longworth. There will be security personnel positioned around to help direct people how to get where they need to go. I’ve also included a map of the grounds below from Google. I have circles the location in which you want to reach.

Thank you for your support. Please contact Lisa Hayden of the Cincinnati Office with any inquiries at lhayden@rettsyndrome.org or 1-800-818-7388.

May 11, 2010 * Contact Us (http://www.rettsyndrome.org/index.php?option=com_contact&Itemid=661) * Subscribe (http://www.rettsyndrome.org/index.php?option=com_acctexp&task=subscribe) * Website (http://www.rettsyndrome.org/) * Donate (http://www.rettsyndrome.org/index.php?option=com_content&task=view&id=579&Itemid=993) * RTT Newsfeed (http://www.rettsyndrome.org/index.php?option=com_wrapper&Itemid=526) Ask Congress to Approve Critical 2011 Funding for IRSF! The International Rett Syndrome Foundation would like to thank each of you for showing your support at the hill on Wednesday, May 12th! As you know, the IRSF will appear before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies where we have been invited to present testimony regarding the requested $500,000 from the Center of Disease Control and Prevention (CDC) to support education, awareness and outreach for patients, health professionals and the public regarding Rett syndrome. This funding will help in establishing the foundation required to accelerate treatments of this debilitating brain disorder that is often misdiagnosed. Please meet in the Longworth Cafeteria between 8:00 and 8:15 a.m. There will be an IRSF table set up with informational materials and people to help you with any questions you might have. If you need any assistance on Wednesday please contact Advocacy Day 2011 Volunteer Shawn Mansfield at 703-507-4756. Please be sure to show support and represent IRSF with any awareness items you may have (purple bracelets, lapel ribbon pins, t-shirts, etc.). If your daughters are not attending, please bring a picture of her to reference as they are advocating our cause. We encourage families to bring cameras to take pictures throughout the day and then send them to IRSF as documentation of the efforts made that day. Below you will find a list of the meetings that the IRSF has pre-scheduled. The majority of these meetings are open to anyone from that state to attend if you so desire. If you plan to schedule meetings on your own you should contact your senator or congressman to arrange a meeting. If you are unavailable, you should ask to meet with those officials Health Aides as they will be able to meet with them as well. All Families: The Public Testimony before the House Appropriations Subcommittee on Labor, Health and Human Services, Education and Related Agencies will take place between 2 and 4:30 p.m. in Room 2358-C of the Rayburn House Office Building. Though we cannot guarantee admittance as the capacity is unknown and the hearing is open to anyone who would like to come, IRSF would like to encourage you to attend if possible. People are hardly ever turned away but it is a possibility. They will do their best to squeeze as many people into that room as capacity will allow. Texas Families: IRSF has set up meeting a meeting at 8:50 a.m. with Hon. Chet Edwards in room 2369 of the Rayburn Building as well as a meeting with Hon. Pete Sessions at 10:15 a.m. located in Room 2233 of the Rayburn Building. There will also be a meeting at 3:00 p.m. with Hon. Kevin Brady in room 301 of the Cannon HOB. All of these meetings are open to all TX families. Minnesota Families: There will be a meeting with Sen. John Cornyn at 11:00 a.m. room 517 of the Hart Building. This is open to all MN families. Please feel free to attend if possible. Maryland Families: There will be a meeting with Steny Hoyer at 4:45 is open to all MD families. We would like as many people present as possible. This meeting will be more of a pleasurable photo opportunity with Rett syndrome’s greatest champion in congress. Steny Hoyer has been such a great advocate for Rett syndrome thus making this a great time to pay respect to the opportunities that Steny Hoyer has helped us to obtain. Click here (http://www.rettsyndromeadvocacy.com/default.aspx) for additional information. Directions/Parking: (http://www.yelp.com/map/longworth-cafeteria-washington) There are various parking spaces nearby that are available to the public. Union station is the closest parking; however, it will still require a cab to Longworth. You could also use the Metro if possible – South Capitol stop is a block from Longworth. There will be security personnel positioned around to help direct people how to get where they need to go. I’ve also included a map of the grounds below from Google. I have circles the location in which you want to reach. Thank you for your support. Please contact Lisa Hayden of the Cincinnati Office with any inquiries at lhayden@rettsyndrome.org or 1-800-818-7388. Created by SONGSWIFT :: web media solutions [SUBSCRIPTIONS