12/10/19 UPDATE
The EveryLife Foundation is pleased to share the good news that, as reported in The Daily Republic, Isabel Bueso’s family “has received official documentation that their deferred action status has been renewed for two years.” We are thrilled for the Bueso family and we will continue to advocate for migrant individuals who participate in a clinical trial or who are receiving life-saving medical treatment have a legal pathway to reside in the U.S. during the time such treatment is necessary.
Photo: Isabel Bueso with her parents at last week’s RareVoice Awards where Isabel was honored with the Abbey Award for Federal Patient Advocacy.
9/11/19 UPDATE
EveryLife Foundation Board Chair Mark Dant showed his support today for Isabel Bueso by accompanying her to the Congressional hearing and meetings with Members of Congress. As Dant reports, when Isabel was offered a private bill that would provide a solution for her to remain in the U.S., Isabel replied, “Thank you, but what about everyone else?” Thank YOU, Isabel, for your #rarecourage in standing up for all rare disease patients undergoing treatment through clinical trials who are facing deportation! Advocates: Please stay tuned for updates on this important issue.
Watch Isabel’s testimony (starting at minute 28).
9/9/19 UPDATE: 105 Patient Organizations Sign Deferred Action Letter
The EveryLife Foundation thanks the 105 patient organizations that have signed on to the letter to the Administration in regard to clinical trials, as well as the many individuals who have expressed their support. We encourage advocates to watch the House Committee on Oversight and Reform Hearing which was rescheduled for Wednesday, September 11th at 12:00 p.m.
View the letter with patient organizations..
9/5/19 URGENT: CALLING ALL PATIENT ORGANIZATIONS
The National MPS Society, CAL Rare and the EveryLife Foundation ask patient organizations to sign on to a letter asking the Administration to ensure that migrant individuals who participate in a clinical trial or who are receiving life-saving medical treatment have a legal pathway to reside in the U.S. during the time such treatment is necessary. Deadline to sign COB Sept. 9th. To sign on to the letter, please email EveryLife Foundation Executive Director Julia Jenkins at jjenkins@rareadvocates.org.
View the patient organization sign-on letter.
9/3/19 Statement from Julia Jenkins, Everylife Foundation Executive Director:
“We are relieved that the United States Citizenship and Immigration Services has re-opened pending deportation deferral requests, including those for rare disease patients seeking medical deferments. While this is a positive development, this action does not guarantee that rare disease patients may remain in the U.S., continuing their life-saving therapy. However, this action does prevent their immediate deportation. The EveryLife Foundation is actively engaged with stakeholders and lawmakers to seek a lasting solution for these families. EveryLife Board Chair Mark Dant has been in direct communication with Isabel Bueso’s family and will be meeting with Members of Congress this week. We encourage advocates to watch the House Committee on Oversight and Reform Hearing this Friday, September 6th at 1:00 p.m. Eastern Standard Time. We will continue to update the community with any urgent developments and direction on how they may take action.”
Statement from the USCIS on September 2nd.
Photo: EveryLife Foundation Board Chair Mark Dant and MPS VI Patient Isabel Bueso
