All posts by Amity Westcott-Chavez

APFED Announces Recipient for 2022 HOPE Pilot Grant Award

Announcements, APFED Blog, Press Releases, What's New

APFED is proud to announce that, thanks to the generosity of our donors, we are offering the 2022 HOPE Pilot Grant to Michael Rosenblum, MD, PhD from the University of California at San Francisco. Dr. Rosenblum will receive $100,000 in funding over a two-year period for his promising research study titled “Biology of Th2-interacting fascial fibroblasts in eosinophilic fasciitis.”

The goal of Dr. Rosenblum’s research is to examine the cellular and molecular interaction of skin fibroblasts (cells that are part of the skin’s structure) with eosinophils to determine the causes of disease and its relapse. The findings of this research can be applied to other eosinophil-associated diseases in the future, which can lead to new therapies.

Recipients of APFED’s HOPE Pilot Grant award are chosen through a competitive peer-review process, which is how premier scientific funding agencies like the National Institutes of Health ensure top-level research in the field is funded. The grant was established to support researchers as they initiate new, innovative projects relevant to eosinophil-associated diseases that are likely to be impactful.

An ad-hoc committee of volunteer peer reviewers, experts in the field of eosinophil-associated disease research, review and score each proposal APFED receives for funding consideration. This rigorous process helps us to identify the best research that will have the biggest impact to best to direct donor dollars.

This was an incredibly competitive year for applicants. Dr. Rosenblum’s research proposal was one of 16 projects submitted for funding consideration. It is also the first grant APFED has funded for eosinophilic fasciitis. Eosinophilic fasciitis is a subset of eosinophil-associated disease. It occurs when eosinophils cause thickening and inflammation of the connective tissue beneath the skin.

We are grateful for donors and community fundraisers that have supported the HOPE on the Horizon Research Grant Program. The advances toward a better understanding of eosinophil-associated diseases, non-invasive and accurate diagnostics, and therapeutic targets are not possible without the generosity of donations to our program.

On behalf of people around the globe who live with eosinophil-associated diseases, thank you!

APFED to Host Patient Education Conference on Eosinophil-Associated Diseases in San Diego and Online, July 7-9, 2022

Announcements, APFED Blog, Media Info, Press Releases, What's New

EOS Connection 2022 will offer the latest research developments, practical management strategies, and opportunities for attendees to connect

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) will host its 20th annual patient education conference on eosinophil-associated diseases from July 7-9, 2022. EOS Connection will take place at the San Diego Marriott Mission Valley in California, with sessions and networking available to both in-person and online audiences.

Eosinophil-associated diseases are chronic inflammatory conditions characterized by elevated levels of eosinophils (a type of white blood cell) in one or more specific areas of the body. The elevated number of eosinophils cause inflammation and damage to tissues and organs. These conditions require lifelong treatment and symptoms can be debilitating.

Patients, caregivers, families, advocates, healthcare providers, researchers, and all those wishing to learn more about these conditions are invited to join online or onsite in San Diego. Attendees may watch sessions, participate in live Q&A, explore new research in an e-Poster Hall, access resources in the Exhibit Hall, and network with community members.

Presentations from expert speakers will include research advancements in eosinophilic gastrointestinal disease and updates from the Consortium of Eosinophilic Gastrointestinal Disease Researchers (CEGIR) and recipients of APFED-funded research. Practical strategy sessions are designed to help patients and families better manage dietary restrictions, plan for healthcare costs, and manage chronic pain. View the full EOS Connection schedule at apfed.org/conference.

Hear Your Song, a nonprofit that empowers young people with serious illnesses and complex health needs to share their stories and perspectives through collaborative songwriting, will lead two special virtual sessions for youth participants.  Participants can learn more and register for this special session here.

“We’re looking forward to connecting with community members to share valuable resources and insights and help provide strategies for better living for families affected by these diseases,” said APFED’s Executive Director Mary Jo Strobel. “We’re grateful to our presenters, partners, and volunteers for the opportunity to deliver an agenda that addresses topics of interest and importance to the patients we serve.”

 To make the conference more accessible for those who wish to join onsite in San Diego, APFED is offering conference registration for $25, which includes most meals, and travel grants to eligible applicants to help offset costs. Virtual attendance is $15, and APFED offers free access through free membership to the organization.

EOS Connection 2022 is made possible thanks to the generous support of APFED’s Education Partners, including Presenting Partners Sanofi and Regeneron. Since 2007, Regeneron and Sanofi have collaborated to help people with conditions that are often difficult to diagnose and treat, using innovative technology platforms. Both companies are proud to serve as presenting sponsors and partner with APFED to welcome the community to come together for the conference.

Other Education Partners participating in the event include but are not limited to Abbott, AstraZeneca, Ellodi Pharmaceuticals, GSK, and Reckitt’s Mead Johnson Nutrition.

To learn more and register for EOS Connection 2022, please visit: apfed.org/conference.

About the American Partnership for Eosinophilic Disorders (APFED)

The American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization whose mission is to passionately embrace, support, and improve the lives of patients and families affected by eosinophil-associated diseases through education and awareness, research, support, and advocacy. https://apfed.org/

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New Discounted Registration for EOS Connection 2022!

Announcements, APFED Blog, What's New

We understand the challenges of today’s economy and the rising costs of travel. APFED is pleased to share the following ways in which we are making EOS Connection 2022 patient education conference more accessible for all who wish to participate.

  • Reduced registration fees: Effective immediately, we have reduced registration costs for those registering in advance to attend the conference in-person in San Diego, July 7-9. (If you’ve already registered and paid, we will refund you the difference.)
  • Travel grants: We are offering $500 travel reimbursements to eligible applicants. Apply now.
  • Allergy-friendly meals included with in-person registration: For those attending the event onsite in San Diego, registration fees will include allergy-friendly breakfast and lunches July 8 and 9, and a dinner buffet on July 9.
  • Discounted hotel rooms: We have secured discounted room rates at the Marriott Mission Valley in San Diego for stays between July 6-10 ($189 plus tax, a savings of more than $100 from the standard rate). To get the special rate, rooms must be booked by 4 PM PT June 14, 2022, through this special link.
  • We will continue offering free virtual access to the event to all APFED members (apfed.org/apfed-personal-membership/). Use the special discount code when registering to waive the virtual attendance fee: VIRTUAL22.

Register now: https://eosconnection2022.vfairs.com/. We look forward to seeing people in person again in San Diego next month and in our virtual conference environment!

Updates on Formula Shortage

APFED Blog, What's New

Page updated 7/13/22

Background

In February 2022, the U.S. Food and Drug Administration (FDA) announced investigation of consumer complaints of Cronobacter and Salmonella infections. All cases reportedly consumed powdered infant formula produced from the Abbott Nutrition facility in Sturgis, Michigan, and advised consumers against using specific logs of Similac, Alimentum, or EleCare powered infant formulas. Abbott soon issued a voluntary recall of powdered formulas manufactured in Sturgis. APFED is updating this page with resources and information as it becomes available.

 

Information and Resources from Abbott

 

Information and Resources from FDA

Information and Resources from HHS

Information and Resources from the White House

Information and Resources from Medical Societies and Nonprofit Organizations

Information and Resources from Manufacturers of Other Brands of Amino-acid Based Formula

What You Can Do

  • Speak to your doctor before making any changes to your/your child’s diet or before using an alternative to regular brand of formula (see below).
  • Do not dilute formula, such as by adding water, in attempt to make your existing supply last, nor attempt to make your own formula.


APFED Advocacy

APFED is sharing information with patients and caregivers about the recall, and communicating questions and patient impacts to clinicians and researchers, the press, and to formula manufacturers. We are working collaboratively with research partners and other organizations to capture patient experience with accessing specialty ingredients and amino acid formulas during supply chain disruptions due to COVID and to this formula recall, and the impacts on disease management and health. The goal is a publication in the near future that documents barriers to access and can help inform future policies and frameworks to improve access to medical foods in the event of supply chain disruptions. We are also continuing our ongoing advocacy for passage of the Medical Nutrition Equity Act (see below for details).

 

Medical Nutrition Equity Act

The current formula shortage is a significant crisis, and we expect resolution in the near future. For those who are denied reimbursement by insurance for elemental formula, the lack of access will continue until there is legislation to facilitate that access. Please join us in calling on Congress to resolve this issue through enactment of the Medical Nutrition Equity Act. Visit nutritionequity.org to learn more and to take action!

 

 

National Eosinophil Awareness Week (May 15-21, 2022) Recognizes Impact of Eosinophil-associated Diseases

Announcements, APFED Blog, Press Releases, What's New

Atlanta, GA (May 13, 2022) – The American Partnership for Eosinophilic Disorders (APFED) will celebrate the 15th annual National Eosinophil Awareness Week (NEAW) from May 15-21, 2022. APFED is engaging people across the world to raise awareness of eosinophil-associated disorders.

Eosinophils (pronounced “ee-oh-sin-oh-fills”) are a type of white blood cell that is formed in the blood marrow. They are part of the immune system and help with infections, inflammation, and allergies. If a person has too many eosinophils, without a known cause, they may have an eosinophil-associated disease.

Many patients experience a delayed diagnosis of eosinophil-associated diseases. The diagnosis depends on where in the body the eosinophils are found. Eosinophils may affect different parts of the body, including but not limited to the gastrointestinal tract, heart, sinuses, blood, lungs, bladder, and connective tissue.

Eosinophil-associated diseases are rare. They are chronic conditions that require long-term management. They can also be debilitating and impact quality of life. The conditions affect both adults and children.

In 2007, the U.S. House of Representatives passed House Bill 296, an initiative spearheaded by APFED, to officially recognize the third week of May as NEAW. Since then, advocates have increased efforts during this special week to shine a public light on eosinophil-associated diseases and the impacts of living with them.

“Although we work year-round to educate, National Eosinophil Awareness Week is a dedicated time to increase efforts to teach the public and medical communities about symptoms, diagnostics, and treatments. When symptoms are recognized more quickly, the diagnostic timeline decreases, and patients can start treatment sooner,” said Mary Jo Strobel, APFED’s Executive Director. “We are calling on everyone to join our community’s efforts to educate, and to learn about these conditions and their impacts.”

Buildings and landmarks around the world are lighting up magenta in honor of National Eosinophil Awareness Week. A list of locations that will light up is available at apfed.org/lightup.

APFED is grateful to its education partners for supporting its 2022 celebration of National Eosinophil Awareness Week. This includes Abbott, Allakos, Arena Pharmaceuticals, AstraZeneca, Bristol Myers SquibbTM, Ellodi Pharmaceuticals, GlaxoSmithKline, Nutricia, Sanofi, and Regeneron. Their support provides APFED with the means to increase the dissemination of educational materials to patients, providers, and the public with broad outreach.

To learn more about eosinophil-associated diseases and ways to celebrate National Eosinophil Awareness Week, please visit apfed.org/NEAW.

About American Partnership for Eosinophilic Disorders (APFED)

Founded in 2001, the American Partnership for Eosinophilic Disorders (APFED) is a 501(c)(3) nonprofit organization that assists and supports patients and families affected by eosinophil-associated disorders, by providing education, creating awareness, supporting research, and promoting advocacy. To learn more, visit apfed.org.

 

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