PHE - Resources

"Rachelle Babler explores the untapped powers of combining music and advocacy to create human impact. She did this after losing her sister to colon cancer to create awareness around prevention and screening. The response was overwhelming. While many have advocated through speeches, fundraisers and media, very few advocate through songwriting and music. Maybe music will be the critical voice that creates the awakening to help us unite, during times of chaos and separation. When we are divided by speech, we can be united and reunited through the power of song. Rachelle Babler grew up in Southern California near the sunny beaches of San Diego and has always been an avid explorer, traveler, musician and creative soul. At the height of her career in forensics, she quit her job cold turkey to pursue her "why" and found out what that was during a global pandemic, "TO empower others to consciously advocate, SO THAT they can heal, inspire and unite the human collective". She is a #1 International Best Selling Co-Author, Speaker, Advocate. Singer/Songwriter and proud mother to her two amazing children, Austin and Camryn. This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx"

"The MIPACT study is a prospective cohort study designed to integrate multiple sources of digital data to better understand clinical phenotypes. Participants were recruited from Michigan Medicine and the surrounding communities and provided with an Apple Watch series 3 or 4 and an Omron Evolv Wireless Blood Pressure Monitor. Participants consented to provide access to parts of their electronic medical record and to provide a blood sample for laboratory and genetic analyses. Participants were asked to perform regular tasks including guided breathing, BP monitoring, and quarterly survey completion. The study was funded in part by Apple, Inc and performed in partnership with Michigan Medicine."

"This app contains physiologic and activity data for nearly 7,000 MIPACT study participants from the University of Michigan. To protect patient anonymity, data will only be displayed when 10 or more study participants have the selected combination of attributes. Data is available from the first 90-days of study participation and may be updated at a later date. Visit our MIPACT study website for more information."

NEW SONG BY GURU SHABAD SINGH FOR CHARITY, TO BUILD A SAT NAM RASAYAN SCHOOL IN CHIAPAS MEXICO. In honor of his beloved, departed Hari Das, Guru Shabad Singh invites you to contribute to creating a global, multi-cultural, multi-modality healing center space for students and practitioners in San Cristóbal de las Casas, Chiapas, Mexico.  ( People from around the world will come to experience and train in multiple healing modalities, including Sat Nam Rasayan, in which Hari Das was a dedicated and devoted senior teacher.( ( The Center is in its nascent stage, with initial plans coming together for the space and the programming. Your donation is a precious chance to honor Hari Das' legacy as a healer of the planet. ( To learn more about Sat Nam Rasayan please visit: www.satnamrasayan.it

"Can Nonprofits Accept Cryptocurrencies as Donations? Generally, it is lawful for a nonprofit to accept a donation in the form of a cryptocurrency. However, this does not necessarily mean that it would be prudent for all nonprofits to do so. First, nonprofits must understand how cryptocurrency gifts work and what risks may be involved with taking and holding onto cryptocurrency."

Recommended"Stanford University researchers are recruiting ME/CFS, Chronic Lyme, and Long COVID patients for a study to better understand symptom flares such as post-exertional malaise (PEM), or "crashes"."

"An FDA advisory panel recommended emergency use authorization (EUA) of a booster dose of Moderna's COVID-19 vaccine for adults ages 65 and older, as well as for younger adults with high-risk medical conditions or at high risk of occupational or institutional exposure."

"BOSTON-Having exhausted the possibilities of the chromosome pairs that came preloaded on the original human genome, researchers at Harvard Medical School's Department of Genetics told reporters Wednesday they had unlocked 47 new editable genes following their purchase of a CRISPR expansion pack. "This add-on has a ton of incredible new genes, and we can't wait to start inserting them into our lab specimens," said Kevin Spiros, a professor of genetics, remarking that there was nothing more fun than having "some fresh strands of recombinant DNA to play around with." "

"I propose that beyond investor lack of awareness, hesitancy and risk aversiveness, blockchain-based solutions introduce an existential threat to the business of healthcare and therefore detract investment. Blockchain does not just dis-intermediate heavily-invested and powerful third parties in healthcare, like pharmacy benefit managers, group purchasing organizations, and third party administrators; blockchain changes the economic power balance that drives the current status quo, which represents nearly 20% of the US GDP."

Latest from Alex Cahana on the health ecosystem we are intent on distrupting.

Advances in wearable device and home blood pressure monitoring technology offer promising opportunities to characterise population health and to improve understanding of cardiovascular disease risk. These devices also allow for remote longitudinal patient monitoring, increased engagement and health literacy, and delivery of personalised behavioural interventions all while reducing overall health-care costs.1 Various health systems and start-ups seek to combine these data with clinical information from the electronic medical record, and several insurance companies are already trying to incentivise the uptake of wearable devices.2

Full Text PDF available: "Wearable device signals and home blood pressure data across age, sex, race, ethnicity, and clinical phenotypes in the Michigan Predictive Activity & Clinical Trajectories in Health (MIPACT) study: a prospective, community-based observational study"

"Researchers hope that building out sequencing data from more people in tandem with reviewing their clinical information can help steer them to more connections between genetic variants and disease. And with new technology, scientists are getting better at whittling down all the genetic noise produced by looking at someone's whole genome to home in on what's causing these conditions."

"Most people who strap a fitness tracker to their wrist do so for motivation toward a daily step goal, or perhaps to prove their suspicions about a bad night's sleep. They don't necessarily think about ways it can help their employers help them."

The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®) is an integrated database and analytics hub that is designed to be used in building novel tools to accelerate drug development across rare diseases. It is being developed by the Critical Path Institute (C-Path) and NORD through a collaborative grant from the FDA [Critical Path Public-Private Partnerships Grant Number U18 FD005320 from the US Food and Drug Administration].

"Patient-Focused Drug Development (PFDD) is a process that provides patients and caregivers impacted by a rare disease the opportunity to share their experience with those directly involved in the drug development process. The Rare Disease Cures Accelerator, a Data Analysis Platform (RDCA-DAP®), a collaboration between the National Organization for Rare Disorders (NORD®), Critical Path Institute (C-Path), and the US Food and Drug Administration (FDA), can strengthen PFDD efforts to support life-saving and life-changing outcomes. This webinar is intended for patients, caregivers, advocates, students, and those who are interested in learning more about PFDD as well as efforts to accelerate research and drug development in rare diseases, such as the RDCA-DAP. For more information on RDCA-DAP, visit: www.rarediseases.org/rdca-dap. SHOW LESS "

"September 20, 2016 | About a year ago, Boston Children's Hospital launched its second CLARITY challenge. CLARITY Undiagnosed focused on six patient families searching for a diagnosis. Alongside the challenge, a documentary is being filmed, driven by Katia Moritz, a Florida psychologist who is dealing with her own undiagnosed disease. And last month another piece of the puzzle fell into place: the UnDx Consortium met in San Diego to try to put context around these diseases."

James Ian's new song called "Spaces" is made by, and for, the disabled community. While the song highlights a disease known as spinal muscular atrophy, or SMA, it also celebrates the talent of the much broader disability community.

"SPACES is a first-of-its-kind musical collaboration created for everyone with a disability by the SMA community. Each creative component of the program - song, music video and album art - was led by someone with SMA. It uses the universal language of music to elevate the many voices of this community and celebrate our individuality. We're excited to share this with the world."