Learn about a rare, inherited condition

Learn about a rare, inherited condition

Hereditary ATTR (hATTR) amyloidosis is a rare, genetic condition that affects an estimated 50,000 people worldwide. It 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, causes the symptoms of hATTR amyloidosis.

Although anyone can be at risk for this disease, it is more common in certain ethnicities, including people of African, Irish, and Portuguese descent. It is estimated that approximately 1 in 25 (4%) African Americans have a certain TTR gene mutation associated with hATTR amyloidosis.

Symptoms of hATTR amyloidosis can be very different from person to person and can affect some parts of the body more than others. Some symptoms a person with hATTR amyloidosis may experience include:

  • Tingling and/or numbness in the hands and feet
  • Carpal tunnel syndrome in both hands
  • Dizziness upon standing
  • Shortness of breath
  • Diarrhea or constipation
  • Unexplained weight loss
  • Nausea and vomiting
  • Sexual dysfunction
  • Kidney dysfunction
  • Weakness
  • Burning pain
  • Loss of sensitivity to temperature

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.

hATTR amyloidosis is passed down through family members. If one parent has hATTR amyloidosis, each child will have a 50% chance of inheriting a mutation that may cause this condition. A family member may inherit the TTR gene mutation, but that does not necessarily mean he or she will develop hATTR amyloidosis.

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.

You and your family can also learn more about hATTR amyloidosis from Alnylam Patient Education Liaisons (PELs), who are professionals with backgrounds in nursing or genetic counseling and who can answer questions and provide helpful resources about this condition.

Visit www.hATTRbridge.com for more information about hATTR amyloidosis and visit www.hATTRPEL.com to connect with a PEL.

This message is sponsored and provided by Alnylam Pharmaceuticals.

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SDFI Announces Distance Learning Classes and Virtual Town Hall

SDFI Announces Distance Learning Classes and Virtual Town Hall

“Diabetes Prevention & You” Town Hall

African Americans represent roughly 13% of the United States population, but account for nearly 85% of the number of persons who have died from COVID-19. This is a startling statistic that indicates the devastating impact of health disparities in chronic health conditions like Type 2 diabetes, disproportionately affecting African Americans and communities of color.

More than 84 million adults in the United States live with prediabetes, and another 30 million already have Type 2 diabetes. African Americans are twice as likely to die from diabetes than whites, only adding to the many burdens Black communities face in America.

Now more than ever, it is crucial that individuals most at risk for Type 2 diabetes find realistic ways to help prevent this manageable condition. The Southeast Diabetes Faith Initiative (SDFI), a program of The Balm In Gilead, is ready to help families and the faith community take a stand and fight back against diabetes by providing faith-based diabetes prevention programs.

To better serve our communities and increase access to this evidence-based lifestyle change program that is a part of the Centers for Disease Control and Prevention’s National Diabetes Prevention Program, SDFI is going virtual!

Beginning this Fall, eligible persons will be able to join one of our distance learning classes. Our experienced lifestyle coaches will be there to guide and support you along this amazing journey to a healthier YOU! Offering culturally tailored, interactive sessions, SDFI does not just provide you with information, but surrounds you with the emotional, spiritual, and mental support you need. Get access to recipes, fitness programs, food journals, and other tools to help you along the way.

Mark your calendar and make plans now to join The Balm In Gilead’s first Southeast Diabetes Faith Initiative “Diabetes Prevention & You” Town Hall on October 8, 2020. During the town hall, we will have an in-depth conversation about Type 2 diabetes, COVID-19, and how we are making SDFI work for our community.

For providers and healthcare professionals, connect with us to explore opportunities to sign up to become a SDFI Healthcare Partner. Our state managers can work with you and your clients to set up informational sessions to raise awareness about the need to increase screening, testing, and referral opportunities for vulnerable populations. Sign up today to receive more information.

Brain Health Center for African Americans’  Partner Spotlight

Brain Health Center for African Americans’ Partner Spotlight

“Laughter is Medicine: HFC Brings the Funny & Education to the Discussions About Alzheimer’s Disease”

The Balm In Gilead’s National Brain Health Center for African Americans partners with a diverse group of organizations, academic centers, and other community-based organizations to support its mission to increase awareness among African American communities about brain health and cognitive issues like dementia and Alzheimer’s disease. It takes a village, and The Balm is proud to highlight HFC’s work (formerly Hilarity for Charity). Founded in 2012 by Seth Rogen and Lauren Miller Rogen (HFC) is a national non-profit organization whose mission is to care for families impacted by Alzheimer’s, inspire the next generation of Alzheimer’s advocates, and be leaders in brain health research and education.

HFC is accelerating progress in Alzheimer’s care, prevention, and support all while bringing some laughs and light to the too-often disheartened Alzheimer’s space. The organization’s blend of comedy, entertainment, and education helps bring much-needed awareness to this disease for which there is currently no cure. In addition to hosting its signature live events and Brain Health Dinners, HFC has raised over 13 million dollars and awarded over 325,000 hours of in-home care relief to Alzheimer’s family caregivers through their Caregiver Respite Grant Program. In addition to providing caregiver respite, HFC organizes online support groups to build caregiver community and connectivity, engages young people across the country to become Alzheimer’s advocates, funds prevention-focused and brain-health research, and teaches people how to care for the health of their brains today, so they can reduce their risk tomorrow.

The Balm commends HFC for their amazing work. We look forward to partnering with them in the future as a part of The NBHCAA’s mission to improve brain health equity and disrupt the impacts of Alzheimer’s and dementia in congregations and communities nationwide. To learn more about HFC, brain health, and how you can get involved, visit them on the web at https://wearehfc.org/brainhealth/

The Balm In Gilead’s Southeast Diabetes Faith Initiative (SDFI) Transitions to Distant Learning

The Balm In Gilead’s Southeast Diabetes Faith Initiative (SDFI) Transitions to Distant Learning

In the United States, more than 88 million adults suffer from prediabetes. Roughly 84% of these individuals are unaware that they have this disease.

The Southeast Diabetes Faith Initiative (SDFI) is a multi-state faith-based initiative created by The Balm In Gilead to expand access and utilize the National Diabetes Prevention Program (National DPP). The goal of SDFI is to address the increasing burden of prediabetes and Type 2 diabetes in the African American community.

A New Way of Learning

Before COVID-19, the Southeast Diabetes Faith Initiative held 37 weekly face-to-face classes in five states. 85% of these classes were held at local churches. However, as a result of the stay at home orders, the research-based program focusing on healthy eating and physical activity needed to shift to a virtual delivery system so that learning could continue.

Research shows that online learning can help increase the retention of information. Nearly 450 participants embraced and adjusted to the “new normal” despite the varying comfort levels in using digital technology. “The COVID-19 pandemic has resulted in a shift in how we learn and communicate,” said Tanya Henderson, SDFI Program Manager. “We had a sudden shift away from classroom instruction, and overall it has been well received.”

Transitioning to a distance-learning format has allowed The Balm In Gilead to continue providing a valuable service to communities that are more vulnerable to Type 2 diabetes. “COVID-19 has disproportionately affected the African American community,” Pamela Price, Deputy Director of The Balm In Gilead. “Scientific lifestyle changing programs like the Southeast Diabetes Faith Initiative culturally tailor activities and messaging to help reduce the long-term burden of diabetes on communities of color.”

Recently, the Centers for Disease Control and Prevention (CDC) recognized four out of five Southeast Diabetes Faith Initiative state organizations for full or preliminary recognition. This means that programs offered through SDFI demonstrate the effectiveness and achievements on the scale of national performance criteria and standards. The national recognition allows SDFI to serve more Medicare and Medicaid beneficiaries through the covered health benefit of Diabetes Prevention Programs (DPP). “We’ve worked very hard to achieve this recognition. Preventing Type 2 diabetes is paramount for saving lives,” exclaimed Henderson.

The accomplishments achieved by the Southeast Diabetes Faith Initiative in Virginia, Georgia, North Carolina, South Carolina, and Alabama have led to the expansion of the program into Mississippi.

“The Balm In Gilead hopes that as more learn about the Southeast Diabetes Faith Initiative, they will want to participate and help improve the overall quality of life for African Americans and other minorities through prayer, education, advocacy, and healing,” said Price.

As distance learning becomes the new norm, classes will continue. “We are excited to announce that we are offering new distance learning programs starting this Fall and continuing with hybrid learning in Spring 2021, ” said Price.

For more information on the Southeast Diabetes Faith Initiative, visit www.balmingilead.org/sdfi/. 

10 Essential Guidelines for Reopening Communities of Faith

10 Essential Guidelines for Reopening Communities of Faith

Continuing to Worship During COVID-19 Pandemic 

For approximately 14 weeks, our country has been researching, observing, studying, and determining the best ways to reopen and keep citizens safe as COVID-19 remains a threat to us all. As many churches are considering opening their doors, there have been some houses of worship that have already begun welcoming congregants back into edifices for worship services. Their decisions have been aligned with the recommendations of governors across the United States who are implementing different reopening phases per state. Some states are in Phase 3 of reopening, which will allow for more social gatherings.

There are several essential guidelines that pastors and religious leaders need to consider to determine if their churches are ready to reopen and manage the crowds that may enter their places of worship. The Centers for Disease Control and Prevention have outlined ways faith communities can develop, implement, and maintain (with constant likely revisions) a plan for reopening their places of worship. There are cleansers and processes that they recommend to ensure proper routine cleaning and disinfecting, maintaining safe practices, and reducing potential exposure to the coronavirus. Social distancing continues to be necessary while keeping six-feet of distance from persons not in your immediate household.

The spiritual well-being of those who seek guidance is the primary focus of faith leaders, and the safety and physical well-being of those people are also an element of spiritual care. When deciding on when and how to reopen churches is recommended by demonstrating the act of loving one’s neighbor as oneself. Churches should be mindful of the status of COVID-19 related illnesses in your community, remain informed of the local government’s recommended guidelines and implementation of those guidelines, surveying your congregants and their concerns, and making decisions relying on wisdom and guidance.

Here are 10 essential guidelines to consider for church reopening.

  1. Stay Informed. Stay updated about COVID-19 from local and state authorities, and don’t forget to adhere to safety guidelines recommended for your specific area.
  2. Enforce the Use of Masks. Ensure that all church leaders and members of the congregation are wearing masks in the presence of others. Try to enforce this rule to all except those with breathing problems and small children.
  3. Limit Capacity. Consider having a limited capacity of congregation members to ensure that there is enough space to provide safe distancing during church services. One way to limit church capacity is to provide virtual service as an alternative to in-person services.
  4. Promote Social Distancing. Make sure that there is enough space within the congregation to properly distance members from one another. Consider providing physical guidelines, so that it is easier for members to know where they should sit and stand.
  5. Be Aware. Church member leaders that are sick or have come in contact with anyone with COVID-19 should stay at home and quarantine for two weeks.
  6. Encourage Proper Hand Hygiene. All members and staff should maintain proper hand hygiene by washing hands and using sanitizers when possible. Be sure to provide sanitizing stations and antibacterial soap as a preventative measure.
  7. Sanitize and Disinfect. Before church services, sanitize the whole area, especially areas that are frequented most by church members. After services, make sure to disinfect all bibles and materials used during service to discontinue the spread of germs.
  8. Educate the Masses. Provide educational posters, bulletins, and flyers, so that the congregation can stay informed about what the church is doing to prevent COVID-19 and how they can help with preventative measures.
  9. Handling COVID-19 Cases. If a person is diagnosed with COVID-19 and has been within your church’s presence, consider closing immediately and sanitizing the area and building where the individual was present before you resume activities or service.
  10. Train all Clergy and Staff. Consider conducting training virtually, or if in-person on the above safety measures and guidelines.
What are CAD and PAD?

What are CAD and PAD?

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Coronary artery disease, or CAD, is the most common form of heart disease and the leading cause of death for both men and women. It’s a progressive condition that is the result of plaque buildup, or atherosclerosis, in the arteries that supply blood and oxygen to the heart. It is also common for people with CAD to have peripheral artery disease, or PAD, a condition in which plaque buildup occurs in the arteries that supply blood to your limbs, usually your legs.