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Sue Lanyon
  • Kansas City, MO
  • United States
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Latest Activity

Sue Lanyon is attending PPMD's event

[Upcoming Webinar] Navigating Access to Therapies Once Approved at Online Webinar - Eastern Time Zone

September 29, 2016 from 1pm to 2pm
Thursday, September 29th at 1pm ETWith last week’s long-awaited and historic accelerated approval of Exondys 51 and other potential therapies currently in review and in late stages of development, the prospect of navigating multiple health insurance plans and patient assistance programs may feel daunting. PPMD continues to work towards broad access for our community and is committed to helping you master these new and complex systems. Join us Thursday, September 29th at 1pm ET for the first in…See More
Sep 26, 2016
Sue Lanyon is attending PPMD's event

PPMD's Every Single [One] Tour: Kansas City, MO at Kansas City, MO

October 22, 2016 all day
Registration for this FREE day-long meeting for families is now open! Click here to register. ------In an effort to reach every single family facing a Duchenne diagnosis in the U.S., PPMD is launching a multi-year community experience called the Every Single [One] Tour. Combining each of the pillars that make up PPMD’s mission – To End Duchenne – the Every Single [One] Tour will bring updates on research, advocacy, and…See More
Sep 5, 2016
Sue Lanyon is attending PPMD's event

Webinar: BMS Anti-Myostatin Adnectin Program at Online Webinar - Eastern Time Zone

March 30, 2016 from 1pm to 2pm
Wednesday, March 30th at 1pm easternPlease join PPMD and Bristol-Myers Squibb (BMS) as we host a webinar Wednesday, March 30th at 1pm ET to discuss the BMS Anti-Myostatin Adnectin Program, recent preliminary data from the first-in-human study of the BMS anti-myostatin, and a clinical trial that BMS is conducting to test this drug in boys with Duchenne muscular dystrophy.Speakers:Pat Furlong, Parent Project Muscular DystrophyLeslie Jacobsen, MD, Bristol-Myers SquibbLeslie Jacobsen is the Medical…See More
Mar 23, 2016
Sue Lanyon is now a member of PPMD Community
Oct 26, 2015

Profile Information

About me:
I am the grandmother of a beautiful 2 1/2 year old grandson, currently am an Early Childhood Special Educator at the University of Kansas, specializing in teacher training for over 20 years, and prior taught special education in the public schools for 17 years.
About my family:
My grandson, Eli, was diagnosed with Duchenne MD in August, 2015. At the age of 4 months, we learned he had small optic nerves and a condition called optic nerve hypoplasia (ONH), with growth hormone deficiency.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
Kansas City

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