All posts by Amity Westcott-Chavez

Voice of the Patient Report: Unmet Needs of Asthma in Childhood

Announcements, APFED Blog, In the News, Press Releases, What's New

“Asthma has truly impacted, not just my life and the way I live every day, but my family’s life and who I am as a person today.”

– Regan Lloyd, 17-year-old living with asthma

To bring the voice of patients and caregivers impacted by asthma in childhood to the forefront of drug development and research, the Allergy & Asthma Network, American Lung Association, American Partnership for Eosinophilic Disorders, and Asthma and Allergy Foundation of America collaborated to produce the Voice of the Patient Report on Asthma in Childhood. The report is part of the Little Airways, Big Voices initiative.

The report highlights what is important to people living with and managing asthma in childhood. It will help the U.S. Food and Drug Administration make decisions as they consider new treatment options. It will also help researchers, clinicians, and drug developers as they consider new areas of research.

Throughout the Little Airways, Big Voices initiative, we heard that people managing asthma in childhood want treatments that reduce asthma symptoms, have fewer side effects, and allow them to participate in more activities.

Now we ask that all stakeholders work together to improve the quality of life for people managing asthma in childhood. Together, we can take steps to improve asthma education, advocacy, research, and drug development.

Your Voice Makes a Difference

Your stories help us raise awareness about asthma in childhood. This includes everyone who participated in the Little Airways, Big Voices externally-led patient-focused drug development meeting on September 20, 2021, submitted written comments, and/or completed our online survey.

Special thanks also to Sanofi, Regeneron, Amgen, and Novartis for sponsoring the Little Airways, Big Voices initiative.

What Is a Voice of the Patient Report?

The FDA established the patient-focused drug development (PFDD) initiative to collect patient insights on specific diseases, including their impact on daily life and treatment options. PFDD meetings are designed to connect patients and caregivers directly with the FDA, as well as researchers and drug developers. Some PFDD meetings are led by the FDA and others are externally led by patient advocacy organizations. The meetings and resulting Voice of the Patient reports help the FDA identify what is important to patients. This includes what people want treatment to look like (apart from a cure).

On September 20, 2021, the Allergy & Asthma Network, American Lung Association, American Partnership for Eosinophilic Disorders, and Asthma and Allergy Foundation of America hosted a virtual externally-led patient-focused drug development meeting about asthma in childhood.

The Voice of the Patient Report on Asthma in Childhood summarizes the findings from that meeting. The report also includes findings from written comments and results from an online survey. The report will help the U.S. Food and Drug Administration make decisions as they consider new treatment options. It will also help researchers, clinicians, and drug developers consider new areas of research.

 

 

Deadline July 15: Call to action for Medical Nutrition Equity Act!

APFED Blog, What's New

Call to action! This is our best year to pass the Medical Nutrition Equity Act! Be sure to share your story by July 15!

The White House is collecting personal stories their upcoming White House Conference on Hunger, Nutrition, and Health this fall. They will use the stories to develop a policy agenda that will be backed by President Biden and Congressional Leadership. We need YOU to submit your story to help explain why the Medical Nutrition Equity Act should be a priority for this conference. Getting it included will be enormously helpful in our efforts to get the bill passed this year!

The deadline is July 15, but please do it TODAY and ask your friends and family to also submit comments!

INSTRUCTIONS for submitting your personal medically necessary nutrition story to the White House’s Conference on Hunger, Nutrition and Health:

Click here – https://bit.ly/whcsept2022

Scroll to the form at the bottom titled, “White House Conference on Hunger, Nutrition & Health – Share Your Ideas & Stories”

Fill out your name and contact information

In the “Please share your ideas/stories” section, individuals comments should include the following:

– Share your individual story about why medically necessary nutrition is critical to your life

-Make sure to talk about what it is like to live with the uncertainty of access to your medically necessary nutrition.

– Specifically ask that the Conference include a focus on access to medically necessary nutrition and legislation to address these issues, such as the Medical Nutrition Equity Act

APFED Announces Recipient for 2022 HOPE Pilot Grant Award

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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

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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!