All posts by Mary Jo Strobel

Medical Nutrition Equity Act of 2017

Advocacy, Announcements, What's New

This spring, the Medical Nutrition Equity Act was reintroduced into Congress. This legislation would require medical foods, such as elemental formula prescribed to treat eosinophilic disorders, to be covered under Medicaid, Medicare, the Federal Employee Health Benefit Program, and private insurance.

Currently, the bill currently has 13 Congressional co-sponsors  from California, Georgia, Massachusetts, Minnesota, New York, North Carolina, Ohio, Tennessee and Washington. 

We are asking our patient community to please contact their Representatives and encourage their co-sponsorship of this important legislation, too.

To find out who represents you, search your city/state or zip at http://whoismyrepresentative.com/.

Advocacy, Announcements, In the News, What's New

Revised Draft of the Better Care Reconciliation Act of 2017

A revised draft of the Better Care Reconciliation Act of 2017 (BCRA), an amended version of the American Health Care Act (AHCA) that passed the House of Representatives in May, was released yesterday.

The revised draft is still concerning to those with rare diseases. The draft permits insurers to offer plans that are not compliant with current patient protections, opening the possibility for discrimination against patients with preexisting conditions, who may in turn lose access to quality and affordable coverage.

The draft BCRA still shows Federal funding cuts to Medicaid by establishing caps and optional block grants. In turn, states may cut eligibility, coverage, and services in order to compensate. Additionally, this draft would still phase out Medicaid expansion, potentially leaving many rare disease patients without healthcare insurance.

Please continue to let your Senators know your concerns about the BCRA draft, and encourage them to reject the draft as it is currently written.

>  Read more about the concerns of the BCRA for the rare patient community

APFED Awards 2017 Elizabeth Allen Founder’s Award

Announcements, What's New

Each year, APFED’s Executive Board awards an APFED member who has shown great dedication to our mission, making significant contributions in the areas of research, education, advocacy and awareness.

Named for one of APFED’s founding mothers Elizabeth (Mays) Allen, this award is presented in recognition of an outstanding community member who has gone “above and beyond” to help APFED further its mission and achieve its goals.

It is our honor and pleasure to present the 2017 Elizabeth Allen award to Juliet Ross.

Juliet has been immersed in our community for more than five years, working on a variety of platforms and through many channels to raise the awareness of eosinophil-associated diseases.  A staunch advocate, she has shared the caregiver’s perspective through various outlets including national press interviews (look for her in an upcoming public service announcement being produced by APFED!), and has helped countless families as they learn to cope with these diseases. She has supported efforts for insurance coverage of medical foods, and speaks out about improved access to care for families who need it.

Juliet has also made significant contributions to research funding. Over the years, she has organized and supported fundraisers that collectively have raised enough funds to support a research award though APFED’s HOPE on the Horizon Research Program.

Please join us as we celebrate and recognize Juliet’s contributions to our patient community. We are grateful for all she has done in support of families living with eosinophil-associated diseases!

 

 

APFED Holds 15th Annual Eos Connection Conference in Greenville, SC for Those Living with Eosinophilic Gastrointestinal Disorders (July 7-8, 2017)

Announcements, Press Releases, What's New

(Atlanta, GA)—The American Partnership for Eosinophilic Disorders (APFED) is hosting its 15th Annual Patient Education Conference on Eosinophilic Gastrointestinal Disorders (EGIDs) this week in Greenville, SC on July 7-8.  The conference is a unique opportunity for patients, families, caregivers, advocates, and experts from across the United States to exchange knowledge, experiences, needs, and perspectives.

Held at the Hyatt Regency Downtown, Eos Connection will provide a patient-tailored program that highlights important information in the clinical and research areas. This year’s conference will feature roughly 25 educational and experiential sessions designed specifically for the Eos community, from recently-diagnosed patients to veterans of EGID management. The agenda will also include programs for children and teens.

Eosinophil-associated diseases (EADs) are chronic inflammatory disorders characterized by above normal amounts of eosinophils (a type of white blood cell) in one or more specific places in the digestive system, tissues, organs, and/or bloodstream, which causes inflammation and damage. The most common of these diseases are EGIDS, which affect the gastrointestinal tract and often render the patient unable to tolerate certain food proteins. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. Those that suffer from EADs often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made.

Eos Connection attendees will learn the latest advancements in the diagnosis and treatment of EGIDS, as well as promising research on the horizon. In addition, attendees will get practical tools to implement in the daily management of EGIDs, as well as strategies to help cope with the physical and emotional challenges of living with EGIDs.

The conference is also a time for individuals and families to meet and build a support network with others who are managing these diseases. Social activities will include APFED’s HOPE on the Horizon Walk on July 7 to raise funds for EGIDs research.

“APFED hosts this conference with the goal of providing our community of patients and families with education and resources to help effectively navigate EGIDs at any stage,” said APFED Executive Director Mary Jo Strobel. “We are grateful to an outstanding lineup of speakers who lend their time and expertise. This conference is celebrating its 15th year, and that would not be possible without an inspiring community that year after year shares its challenges, solutions, successes, and hope for the future.”

For those who cannot attend the conference onsite in Greenville, APFED offers a virtual registration option. On Saturday, July 8, virtual attendees may participate online via webcast in the conference’s general session and submit questions for conference speakers.

Eos Connection 2017 is made possible thanks to the generous support of APFED’s Education Partners, including Presenting Partner EleCare®.

Learn more about the conference and ways to register at apfed.org.

About American Partnership for Eosinophilic Disorders (APFED)

American Partnership for Eosinophilic Disorders (APFED) is a non-profit organization dedicated to patients and their families coping with eosinophilic disorders. APFED’s 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. www.apfed.org

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APFED Kicks Off National Eosinophil Awareness Week (May 14-20, 2017)

Announcements, Press Releases, What's New

Eosinophil-associated diseases community bands together for awareness and action

(ATLANTA, GA)—This week (May 14-20, 2017), the American Partnership for Eosinophilic Disorders (APFED) celebrates the 10th Annual National Eosinophil Awareness Week (NEAW). NEAW was established in 2007 by APFED, a nonprofit patient advocacy organization, to support those who have eosinophil-associated diseases (EADs) and to raise the level of education and awareness in the public and the medical community about these conditions.

Imagine having a rare disease the most people cannot pronounce and that many doctors have not seen or do not understand. You travel from doctor to doctor looking for answers, only to find that once you have a diagnosis, treatments are few. This is the reality for people who suffer from an eosinophil (ee–oh–sin–oh–fil) associated disease, a group of rare diseases caused by a white blood cell called the eosinophil.

EADs can cause disease in many different organs and can present differently depending on the type involved. Those that suffer often embark on a long, frustrating journey seeing many different specialists before a diagnosis is made. Although not commonly life-threatening, these chronic diseases require lifelong treatment and can cause debilitating symptoms. There is no cure and no FDA-approved treatments for most subsets of EAD.

In honor of NEAW, members of the EAD community have joined together with APFED to develop an action-oriented social media campaign called READ for EAD: Rally Around Eosinophil Associated Diseases. The campaign is designed to inspire, educate, and remind patients that they are not alone. During NEAW, participants will dedicate words of inspiration to a loved one and share on social media using the hashtag #READ4EAD, and challenge their friends and family members to participate and/or make a donation to APFED.

“We are inspired every day by amazing individuals with EADs and their families,” said APFED Executive Director Mary Jo Strobel. “We know these READ for EAD contributions will help further strengthen the EAD community, offering not only inspiration but also a reminder that there are others out there who know the unique challenges of life with an EAD. It’s a fun, easy, and meaningful way to spread awareness far and wide.”

Organizations, healthcare providers, and institutions around the globe are joining APFED to recognize National Eosinophil Awareness Week by sharing information with their communities and with the public. Nutricia, the makers of Neocate®, a line of amino acid-based products, has partnered with APFED for its celebration of this special week by providing the means for the organization to distribute educational packets to health care providers and awareness materials to the public.

“By taking action and educating others during NEAW, we can provide hope to patients and families living with these diseases, and change the future,” shares APFED’s President Dr. Wendy Book. “This week is a special time that joins the research community, health care providers, caregivers, and people living with EADs together to heighten awareness and continue to advance these conditions through education, research, and advocacy.”

Visit apfed.org to learn more about eosinophil-associated diseases, current research efforts, and community events that are taking place during National Eosinophil Awareness Week.

Organizations, Groups, and Healthcare Providers Joining APFED in Celebrating NEAW:  Akron Children’s Hospital; Alabama Eosinophilic Disorders Support Group; American Partnership for Eosinophilic Disorders; ausEE (Australia); Center to Advance Palliative Care; Cincinnati Center for Eosinophilic Disorders; Families Affected by Eosinophilic Disorders (UK); Greenville Spartanburg Eos Support Group; Kids with Food Allergies (KFA); International Foundation for Functional Gastrointestinal Disorders (IFFGD); National Eosinophilia Myalgia Syndrome Network (NEMSN); New York Metro Eos Support Group; Utah Food Allergy Network Division of Eosinophilic Support. Learn more about what our partners are doing to recognize NEAW 2017.

About 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. To learn more about APFED and eosinophil-associated diseases, visit apfed.org.

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