All posts by Mary Jo Strobel

Nutritional Support for Families Impacted by Natural Disasters

August 30, 2017Announcements, APFED Blog, What's NewMary Jo Strobel

APFED is working in partnership with many organizations, including Children’s Medical Nutrition Alliance and the International FPIES Association, and formula manufacturers to help families impacted by the recent hurricanes in the U.S. to access prescribed elemental formula to treat certain conditions, such as EGIDs.

We have arranged shipment and dissemination of donated formula to food banks and other service centers in Houston, and to Texas Children’s Hospital. If you are a patient/family that has been impacted and are in need of supply, please contact APFED at mail@apfed.org and we will work to assist you.

For those wishing donate packaged, labeled allergy-friendly food products or medical supplies, the Red Cross has asked that this form be used for submission: http://www.redcross.org/contact-us/in-kindform

Donations of prepackaged, labeled, allergy-friendly food items are also being accepted at the San Antonio Food Bank. To send a donation clearly mark your package as an “Allergy-friendly Donation” and ship to:

San Antonio Food Bank
FOOD ALLERGY FRIENDLY
5200 Enrique M. Barrera Pkwy
San Antonio, TX 78227-2209

If you send a shipment directly from an online retailer (e.g., Amazon), add “FOOD ALLERGY FRIENDLY” in “Address line 2” and in ship information.

» Hurricane Harvey Emergency Relief Resources for Families with Rare Disease in Texas

APFED Announces 2018 HOPE Pilot Grant Cycle

August 3, 2017Announcements, In the News, What's NewMary Jo Strobel

The American Partnership for Eosinophilic Disorders (APFED) is pleased to announce that two 2018 HOPE Pilot Grant opportunities are now available for application.

The APFED HOPE Pilot Grant was established to allow investigators from a variety of disciplines to initiate new projects relevant to eosinophil-associated diseases (EADs). Successful applications will focus on the development of new ideas which are likely to lead to future external funding.

Interested applicants are invited to submit a letter of intent by September 22, 2017. Final applications are due by October 27, 2017. Learn more about the grants we are offering in our 2018 cycle:

2018 APFED HOPE Pilot Grant for Hypereosinophilic Syndrome Research: $25,000 per year for two years (a total of $50,000)

2018 APFED HOPE Pilot Grant for Eosinophilic Gastrointestinal Disorder Research : $50,000 per year for two years (a total of $100,000)

APFED’s HOPE on the Horizon Research Program launched in 2005 and is supported entirely by donations. Contributions to the fund have enabled the organization to direct more than $2 million in support of research initiatives.

For details and to access the application portal, visit //apfed.org/research/grant-application-for-researchers/.

Medical Nutrition Equity Act of 2017

July 24, 2017Advocacy, Announcements, What's NewMary Jo Strobel

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/.

July 14, 2017Advocacy, Announcements, In the News, What's NewMary Jo Strobel

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

July 12, 2017Announcements, What's NewMary Jo Strobel

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!