Sharon F. Terry

09/27/2024

Please join us in officially welcoming Sharon Terry to !

Formerly a member of our External Advisory Council, Sharon joined us in September as the new Director of the Recruitment and Retention Support Unit (RRSU). In her new role, Sharon will be working to expand the reach and impact of the RRSU by implementing efforts to more effectively engage and facilitate participation of diverse patient populations in research. This work may include efforts to identify and address barriers to participation, as well as outreach, education, relationship development, and partnerships with community-based organizations, health care, and service providers.

Tufts Medical Center Tufts Medicine Tufts University

09/05/2024

My dear friend Jessica (our famous actor with PXE) is matching donations to PXE International - give a listen: https://youtu.be/Y6OOcgKZKvw

Many of you know this is near and dear to my heart - my kids have pseudoxanthoma elasticum (PXE) and are nearing the age when vision loss can start. I am racing the clock!!

We have three potential treatments ready for clinical trials - which are so costly! HELLPPPPP!!!

Donate here and watch the thermometer go up! https://www.zeffy.com/en-US/fundraising/8f20a01e-399e-4fa4-b147-e6302b292f19?fbclid=IwY2xjawFG1XVleHRuA2FlbQIxMAABHYfzSvM3oygPyjSKuYbmU-s1NlHC3lbNSHvMQNe_XaHe_Y3LXhoFagw3yQ_aem_CO9lSq0xyXqvqwpC6-KDQg

If you have already donated this year, thank you so much!!

Jessica Harper tells us why funding is needed for PXE International and offers to match!!https://www.zeffy.com/donation-form/8f20a01e-399e-4fa4-b147-e6302b29...

08/15/2024

Hi friends,

You know my children (well, grown adults now) have pseudoxanthoma elasticum (PXE). I have worked, with them, for the past 30 years to see if we could tame this disease. We are finally into clinical trials - several of them - for potential therapies.

You might not know that we have a famous PXEer, Actor Jessica Harper. Jessica was in Minority Report, Stardust Memories, Pennies from Heaven, and a host of other films. She can currently be seen on Paramount Plus in the movie Memory. She is an amazing children's author and songwriter, a great blogger and podcaster, and even has a cookbook.

Jessica is a dedicated board member of PXE International for the past 24 years. Knowing that we are on the brink of finding a treatment, and our coffers are bare from funding so many scientists, she put together a wonderful short video for you all! Please share it with your friends. https://www.youtube.com/watch?v=Y6OOcgKZKvw

Here is the donation button she refers to, and she will match!!! We are so grateful to her and her family!

https://www.zeffy.com/fundraising/8f20a01e-399e-4fa4-b147-e6302b292f19

Thank you!

Sharon

PS: Zeffy doesn't charge PXE International any fees! Thank you, Zeffy!

The Time Is Now: Join Us in Taming PXE!For 29 years, PXE International has been relentless in its mission. Today, we stand on the brink of a monumental breakthrough—a treatment for pseudoxanthoma elasticum (PXE).What does this mean?It means hope. It means the possibility of slowing down or even st...

07/10/2024

Friends - we need 4 more people to take the survey Ian is working on - today if possible: https://digitalcabinet.optimalworkshop.com/optimalsort/northstarproject

If you have every had cancer - even a long time ago, or have it now, can you do the 5 minute survey?

Thank you!!

07/03/2024

Friends, if you have cancer or have had cancer, can you do this short survey that my son Ian has created? It will take you about 5 minutes and will help him articulate patient priorities in their physical functioning regarding cancer treatment and experiences. Please help!!!

06/27/2024

Friends, a Genetic Alliance intern has graduated with her bachelor's in data science, food, and nutrition. She would love a job in public health related to food, nutrition, or data science in the Boston area. She is also my goddaughter so I can vouch heartily for her! Email me any leads for her! sterry@geneticalliance.org

06/27/2024

Friends, a Genetic Alliance intern has graduated with her MS in genetic counseling and is seeking a job in advocacy. During her internship with us, she analyzed our cross-disease burden data and exhibited strong writing skills. Does anyone need a full-time newly-certified genetic counselor? Email me! Sterry@geneticalliance.org

06/27/2024

Friends - email me (sterry@geneticalliance.org) if you are interested in this - A major CTSA (with which we are collaborating) has a 20% position for someone in engagement – if you are interested – email me… it is a remote position with occasional trips to the east coast.
Translational Research is needed to ensure that breakthroughs are quickly translated to the benefit of society and all subpopulations within. Significant evidence gaps remain in our understanding of childhood diseases, and of the effect of treatments on children. As a result, clinicians must often take action based on data from adults. Applicants should describe efforts to include children as a focus of translational research.

With the “graying” of the US population, investigators must recognize and adapt to population longevity and the questions so driven. Applicants should describe efforts on how older patients will be included in research, for example how they might increase or drop the upper age limit for research participation. Another special group includes those who are the survivors of formerly lethal childhood diseases. Research is needed to better understand the impact on and approach to adults with chronic health conditions that originated in childhood, both as a consequence of the disease or its treatment.

In addition to considering longitudinal differences across the lifespan, translational research must also consider cross- sectional differences across populations, such as minority, underserved or health disparity populations, which includes racial, ethnic or gender differences as well as differences in socio-economic status or in a rural vs. urban environment. This may also include other populations such as pregnant women, people with particular disabilities, and “hard-to-reach” groups that are often impacted by health disparities. Applicants should describe how they might collaborate with other CTSA hubs to leverage resources. Applicants are encouraged to adopt and utilize useful tools developed by others.

05/31/2024

Announcing the Gestalt Practice Library and Resource Center - making the incredible body of gestalt practice work available to everyone!

A note from Chris Price A note from Christine Price announcing The Gestalt Practice Library and Resource Center Dear Christine, Fifty-three years ago, I landed in a Gestalt and Rolfing workshop at Esa

03/30/2024

Our new batch of workshops are up on Tribal Ground's site - https://www.tribalground.com/workshops/list/

Do you feel like you need a break? Either from one thing after another, or just a moment's breather? Come to our Intro to Gestalt Awareness Practice to gather some simple portable tools to support yourself in our ever busy (and sometimes crazy) world. A bit of rest, a bit of support... easy and gentle.

And if you have already taken Intro - we have some online and in-person open seat opportunities.

For those who want a more immersive experience, we will be diving into expression and communication. We will include special consideration of expectations and assumptions and how they affect our relationships and our communication. If you are interested in this deeper dive, consider the prerequisites. There are programs between now and July that provide the experience needed to apply.

Hope to see you! Try it, you might like it 😍

January 8 - December 30 Ongoing Practice Circle (Zoom) Note: this Circle started in March 2020 and can be joined anytime provided you meet the requirements. During the pandemic, we realized the importance of coming together as a community and practicing mindfulness. We have found great value in join...

03/22/2024

A new interview I did - posted today:

Alright - so today we've got the honor of introducing you to Sharon Terry. We think you'll enjoy our conversation, we've shared it below. Sharon, appreciate you joining us today. We’d love to hear the backstory behind a risk you’ve taken – whether big or small, walk us through what it was like...