Say hello to Hetlena (@TheLupusLiar) from the 2016-2017 Team of Advisors. We recently caught up with Hetlena and she chatted with us about some of the challenges she faces living with lupus and why she won’t let it stop her: “Putting off your aspirations, dreams, and wants due to the fear of what an illness… Continue reading Meet Hetlena from the PatientsLikeMe Team of Advisors
Tag: patient advocacy
Meet Ginny from the PatientsLikeMe Team of Advisors
Say hello to Ginny (Mrslinkgetter), a case manager and family partner with Youth Mobile Crisis Intervention living with depression and epilepsy. She’s also a member of the 2016-2017 Team of Advisors. Check out what Ginny had to say about living with depression and epilepsy, the loss of her son, and how being her own advocate… Continue reading Meet Ginny from the PatientsLikeMe Team of Advisors
Meet Cris from the PatientsLikeMe Team of Advisors
Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition. Cris recently presented at the ALS Advocacy conference in Washington D.C.,… Continue reading Meet Cris from the PatientsLikeMe Team of Advisors
Meet Gary from the PatientsLikeMe Team of Advisors
Meet Gary (tupelo), a husband, father and grandfather who lives with Parkinson’s disease. Gary’s also a member of the 2016-2017 Team of Advisors. He believes that physical exercise slows the progression of Parkinson’s and practices Tai Chi and Qigong on a regular basis. Check out Gary’s story and his outlook on life with Parkinson’s: “Accepting… Continue reading Meet Gary from the PatientsLikeMe Team of Advisors
Meet Jacquie from the PatientsLikeMe Team of Advisors
Say hello to Jacquie (@Jacquie1961), another member of the 2016-2017 Team of Advisors. We chatted with Jacquie recently about how she lives with her condition and what it meant to become part of this year’s Team of Advisors; “Joining the team is allowing me to…help others who are newly diagnosed or those who think they… Continue reading Meet Jacquie from the PatientsLikeMe Team of Advisors
Meet Glenda from the PatientsLikeMe Team of Advisors
Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF). Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became… Continue reading Meet Glenda from the PatientsLikeMe Team of Advisors
Meet John from the PatientsLikeMe Team of Advisors
Have you met John (JohnJFB126)? He’s another member of the 2016-2017 Team of Advisors. John is a musician, husband and father of four. He’s also living with MS. For John, living with an “invisible” disease is challenging, and he hopes for more compassion and understanding from others in the future. Here, John shares how he finds… Continue reading Meet John from the PatientsLikeMe Team of Advisors
Patient Advocacy: An interview with artist and activist Regina Holliday
Regina Holliday wears many hats. She’s an artist, activist, speaker and author, and she’s painted hundreds of patient stories on the backs of jackets in an ongoing art project called The Walking Gallery. Through her art, Regina promotes better care, treatment and transparency in healthcare. She’s been an advocate of PatientsLikeMe for quite some time (two… Continue reading Patient Advocacy: An interview with artist and activist Regina Holliday
#ChatActChange: empowered to chat, act and make change – together
On October 28, Sally Okun, our Vice President for Advocacy, Policy and Patient Safety, participated in a Twitter chat – using the hashtag #ChatActChange – aimed at empowering people living with chronic conditions to advocate for policy change. Hosted by Diabetes Social Media Advocacy (DSMA), other chat participants included policy expert Susan Dentzer, Diabetes Hands… Continue reading #ChatActChange: empowered to chat, act and make change – together
Recognizing the Rare Disease Community’s Champions of Hope
Did you know that 1 in 10 people worldwide have rare and genetic conditions? PatientsLikeMe was a proud sponsor of the 1st Annual Tribute to Champions of Hope, organized by our partner the Global Genes / RARE Project. Held on September 27th in Newport Beach, CA, the gala recognized outstanding individuals who are working to affect… Continue reading Recognizing the Rare Disease Community’s Champions of Hope