American Multiple Endocrine Neoplasia Support

08/21/2019

https://www.uab.edu/news/health/item/10592-three-siblings-share-cancer-diagnosis-due-to-rare-genetic-mutation
Three siblings diagnosed with MEN 2a

08/21/2019

Nathan Porter
Admin · 23 hrs · tagAdd Topics
Hi everyone! I am currently working on creating a group chat for younger individuals. If you are a parent with a kid that has MEN 2, would your children be interested in joining a group chat with just other kids with the disease. I am just trying to create more of a community among the younger generation. I know how easy it is to feel alone when it comes to having a rare disease

08/21/2019

Sherri Gardner Howell shared a link.
Admin · August 19 at 6:18 PM · tagAdd Topics
Be your own advocate! Living with and managing MEN isn't easy. This free seminar will help you learn more about MEN Type 1, MEN Type 2A and 2B from the caregivers at University of Alabama Birmingham. The conference, expertly put together by Dr. Herbert Chen, will feature a variety of local and national MEN syndrome doctors to address questions that are relevant and important to MEN patients and caregivers.

Date is Nov. 16 at the West Pavilion Conference Center at UAB Hospital (615 18th Street S., Birmingham, AL 35233.

Sponsors: AMENSupport, O’Neal Comprehensive Cancer Center at UAB, Children’s of Alabama and the UAB Department of Surgery.

WATCH OUR PAGE For exciting developments as we move closer to the date.
DON'T MISS IT! To register, click here
https://form.jotform.com/92167504901152

FORM.JOTFORM.US
AMENSupport and UAB Seminar Convention Registration Form
Please click the link to complete this form.

Please click the link to complete this form.

08/08/2019

Nathan Porter shared his first post.
Admin · 3 hrs · tagAdd Topics
Hi everyone! My names Nate Porter. I am 19 years old, a lover of fiction books, and the newest member of the AMENSupport Team.
A little about myself: I was diagnosed with Multiple Endocrine Neoplasia Type 2b (MEN 2b), the summer before my 5th grade year. I have had my thyroid and a bunch of lymph nodes removed. I have been going to NIH since I was 12 years old. I was the person in the MEN2B natural history study as well as one of the first to join and the final person to leave their adolescent Cabozantinib drug trial. I have worked with AMENSupport in the past as a guest speaker at 2 of their seminars. This organization is truly one greatest out there, being focused on getting as much knowledge and support as possible to people/families afflicted by these diseases. I’m so excited to be a part of this family!

08/06/2019

Newly released article for all of our MEN 2a and 2b individuals Hope this helps with new information. We are working on providing more info for our MEN 2a and MEN 2b individuals Linda Hageman, RN

NCBI.NLM.NIH.GOV
Quality of Life and Coping in Multiple Endocrine Neoplasia Type 2
Scarce data are available on the quality of life and psychosocial distress of patients with multiple endocrine neoplasia type 2 (MEN2), a genetic cancer syndrome caused by RET germline mutations. Carriers of RET mutations can face several challenges, ...

06/15/2019

https://www.medscape.com/viewarticle/914029?src=iphone&ref=facebook&fbclid=IwAR1qTQ4l4v7ZcUh21vpZZ8C1AZeE8gIiqIasYhv-XhfRM5KR-pH_kmTtvoE

'You know, we're on the same team.' Drs West, Garon, and Lewis discuss the growing challenges of patient care in this world of information excess, particularly for those practicing in the community.

06/06/2019

Mark Lewis shared a link.

Dear peacock sisters & brothers,
I am back from the American Society of Clinical Oncology annual meeting. It is the Super Bowl for cancer doctors, gathering 40,000+ oncologists in Chicago to share the latest advances in care.
I’m still gathering my thoughts to share with you the biggest takeaways in NETs but for now I did an interview with STAT news that is, in part, about hereditary cancer syndromes getting much-needed attention on the biggest stage of the year in oncology (start around 20-minute mark):
podcasts.apple.com
‎The Readout Loud: Episode 65: A special episode from the halls of the ASCO meeting on Apple Podcasts

06/04/2019

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6345401/…

We assessed the usefulness of real-time molecular profiling through next-generation sequencing (NGS) in predicting the tumor biology of advanced pancreatic neuroendocrine tumors (panNETs) and in characterizing genomic evolution.Patients with metastatic ...

05/27/2019

https://www.youtube.com/watch?v=arSiv9PRo04&fbclid=IwAR2oXrW2-LaxuSprg8MHRcpP8ibwXANXvs0lVK_Qn-x33cXt_IK7QLXkRTY

Remembering those who gave it all so that we can live in freedom. Speech from Ronald Reagan, 1985. Arlington National Cemetery championforest.org

05/27/2019

Lots of new info on NETS and MEN being presented next week here are some of the abstracts;

05/16/2019

The biggest cancer meeting of the year convenes in Chicago in ~2 weeks when the American Society of Clinical Oncology holds its annual conference.
They release the abstracts (research summaries) in advance and today 80 (!) neuroendocrine-specific presentations were announced:
http://abstracts.asco.org/239/CatAbstView_239_554_AT.html

abstracts.asco.org
abstracts.asco.org