The Portuguese-American Leadership Council of the United States
Serving our Community for 29 Years!
LUSUS Newsletter
October 19, 2020

Part of the PALCUS mission is to provide important information to the Portuguese community in the US, and that includes health information. Below is an article about a condition that has been found to be common in people who have Portuguese heritage. In addition to this, PALCUS has hosted some recent webinars about health data about the Portuguese community and how COVID-19 has affected our Portuguese community. We encourage you to view the recordings of these webinars (links are below) and please provide feedback on whether you feel this information has been helpful.

COVID and the Portuguese Community

Covid-19: Schools and Vaccines 

Exploration of Portuguese-American Health Disparities
hATTR Amyloidosis: Portuguese Community Disproportionately Affected By A Rare, Inherited, Rapidly Progressive Disease
Hereditary ATTR (hATTR) amyloidosis is a rare, genetic condition that affects an estimated 50,000 people worldwide. hATTR amyloidosis is caused by a gene change, or mutation, that affects the function of a protein called transthyretin (TTR). In hATTR amyloidosis, the TTR gene mutation causes the protein to take on an abnormal shape and misfold, which causes the protein to build up in various parts of the body, including the nerves, heart, and digestive system. This build-up of proteins, also called amyloid deposits, can cause a range of symptoms from polyneuropathy – numbness, tingling, and burning pain in hands and feet – to cardiomyopathy – dizziness, shortness of breath, and leg swelling – as well as gastrointestinal manifestations, such as diarrhea, nausea, and vomiting. This is not a complete list of symptoms that may be experienced in patients with hATTR amyloidosis. Each patient has a different experience and you may not experience all of these symptoms, or you may not experience them at the same time.

Northern Portugal has the largest cluster worldwide of individuals living with hATTR amyloidosis. Nearly 1 in every 1000 Portuguese originating from Póvoa de Varzim and Vila do Conde may be affected by the disease. Nationwide, approximately 1 in every 4,000 people in Portugal may be affected by hATTR amyloidosis, putting Americans of Portuguese descent at a higher risk for this hereditary disease. People of Portuguese descent experience earlier onset symptoms, with 87% experiencing symptoms before age 40. There are 120 or more gene mutations known to be associated with hATTR amyloidosis. Individuals of Portuguese descent have a high prevalence of the V30M mutation, which is the most common mutation associated with polyneuropathy symptoms of numbness, tingling, and burning pain in hands and feet.

As a hereditary disease, hATTR amyloidosis is passed down through family members. If one parent has hATTR amyloidosis, each child will have a 50% chance of inheriting the mutation from the parent. However, inheriting the mutation does not necessarily mean that they will develop the condition. Despite this family connection, hATTR amyloidosis is often misdiagnosed because its symptoms resemble those of other conditions and can vary widely among people with the same mutation.

Educating yourself and your loved ones about the symptoms of this condition can help you identify them if they occur. Symptoms may worsen over time, so it’s important to talk to your doctor to determine the right plan of action. This may include referring you to a doctor with more experience with hATTR amyloidosis or recommending you work with a genetic counselor. A genetic counselor can help you learn more about the genetic testing process and if a genetic test may be right for you.

If you think you or someone you know may be at risk for hATTR amyloidosis, it’s important to learn more. You can access educational resources and information at Alnylam Pharmaceuticals’ website In addition, you can request to speak with an Alnylam Patient Education Liaison (PEL) who can answer questions you may have about hATTR amyloidosis at

Please note that a discussion with a PEL should not take the place of any discussions you may have with your doctor. If you experience symptoms or become aware of a family history of the disease, speak to your doctor to find out the right action plan. Your doctor may refer you to a physician experienced in managing the disease or to a genetic counselor.

Content sponsored and provided by Alnylam Pharmaceuticals. NP-USA-00229
The Bridge is a registered trademark of Alnylam Pharmaceuticals, Inc. © 2020 Alnylam Pharmaceuticals, Inc. All rights reserved.

Are you a PALCUS member yet?  
We are stronger together!

If you agree with the work undertaken by PALCUS to build the social, cultural and political capital of our community, then please join us and become a member today!

Strong membership participation means a stronger voice in the national Portuguese-American agenda. In order to advance Portuguese language education, increase presence in the congressional caucuses, and provide economic opportunities, the collective voice of thousands is needed!  

In addition, PALCUS is a member-driven non-profit organization that depends on membership dues and fundraising events to fund its operations. Members of the all-volunteer board of directors donate their time and personal funds for travel, lodging and tickets to attend networking events and planning sessions so our administrative costs are relatively low but nonetheless critical to doing business on a daily basis.

There are membership categories to suit every budget and level of interest. Please click on our membership webpage and join our voice today!

 Questions? Contact Graci for more information! 

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Jobs for Portuguese Speakers

If you want to put your Portuguese language skills to use in your next job, there are many opportunities out there! Visit the Jobs for Portuguese Speakers Facebook page to see some job openings.
PALCUS Mission

In order to create a singular voice to advocate for the Portuguese-American and Luso-American communities at large, the Portuguese-American Leadership Council of the United States Inc. (PALCUS) was founded in 1991 as a non-partisan, non-profit, organization headquartered in Washington, D.C. 
The PALCUS mission is to address domestic and international concerns of the Portuguese-American Community.
The Council conducts an expanding program of educational and public affairs activities on issues of interest to the Portuguese-American community and of salience to the Luso-American Relationship.
PALCUS is committed to serving the community through increasingly active government relations efforts, the promotion of a greater awareness of ethnic accomplishments and encouraging stronger ties between Portugal and the United States. In this role PALCUS advances the community professionally, politically and culturally while working to ensure that issues directly affecting our community are addressed through our network of government and community leaders.

PALCUS is a 501(c)3 non-profit organization under the IRS tax code and incorporated under the laws of the District of Columbia. Donations are tax deductible to extent allowed by law and will be acknowledged.
PALCUS has earned the 2019 Gold GuideStarUSA Nonprofit Profile Seal of Transparency. Visit our profile HERE
Contact Information

Phone: 202-466-4664

9255 Center St., Suite 404
Manassas, VA 20110