March 5, 2020 / Advocacy

Update on PPMD’s 2020 Advocacy Conference

As many of you know, PPMD and a number of families from the Duchenne community plan to descend upon our Nation’s Capital this weekend to help make sure that Duchenne research is included in the federal budget during our 2020 Advocacy Conference, March 8-10, 2020.

With coronavirus (COVID-19) top of mind in headlines across the country, in addition to the continued risk for flu and other respiratory illnesses, PPMD has consulted with clinicians from many of our Certified Duchenne Care Centers to determine the best course of action for this year’s meeting.

Below is important information we want to share for anyone who has questions or concerns about attending this year’s Advocacy Conference in Washington, D.C.:

  • As of now, the 2020 Advocacy Conference will still take place with members of the PPMD team attending Hill meetings with lawmakers on Monday, March 9 and Tuesday, March 10. Training will take place on Sunday, March 8. Details can be found on our website. We will continue to monitor recommendations from the CDC and government officials closely and notify the community of any changes to our current plans.
  • If you are worried about the risk of infection or exposure to the coronavirus, do not attend. There is no need to put you or your family at risk unnecessarily. Each family needs to make the decision they are the most comfortable with. PPMD staff will be covering as many meetings as possible on your behalf.
  • If you are sick, or have been recently sick, stay home. If you develop symptoms of the coronavirus, including fever, cough, or shortness of breath, call your physician immediately.
  • If you still plan on attending the Advocacy Conference, we ask that you consult with your physician in advance and review CDC recommendations regularly.
  • Consider your method of traveling: If you are able to drive to Washington, D.C., and avoid more public methods of transportation, you may be at lower risk of contracting the coronavirus than someone traveling a farther distance via plane or train. Again, this is a consideration you should discuss with your physician.
  • Consider the risk of exposure to the virus in your hometown/region: If you live in an area that has multiple cases of the coronavirus, you may be at a higher risk of developing the virus than someone who lives in an area with no reported cases. If this applies to you/your hometown, consider staying home to minimize your risk of exposure during travel. We also recommend that you keep an eye on the number of cases in the D.C. area. PPMD will also monitor for development of coronavirus cases in the D.C. area and communicate any changes as soon as possible.
  • The PPMD Adult Advisory Committee Meeting (PAAC) scheduled for Saturday has been cancelled and will take place virtually online Sunday morning before the conference starts. Details on this virtual version of the meeting will be sent to PAAC members.
  • PPMD will be providing alternative ways families can advocate from home. If you have not done so already, make sure you are signed up to receive Advocacy Alerts so that you can take action from home.

This is an unprecedented time with the entire world on high alert. The decision to attend the 2020 Advocacy Conference is yours, but please know that PPMD is here to help you navigate your options to make an informed decision on what is best for you and your family. Regardless of whether or not you are able to attend the conference in person, we will ensure that the voice of this community is heard by lawmakers and that they understand our urgent need to end Duchenne.

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