Events and Promotions Assistant

The GBS|CIDP Foundation, a non-profit organization, is seeking an Entry Level Events and Promotions Assistant. The Foundation is a non-profit entity providing support, education, research and advocacy for patients, families and caregivers who have Guillain-Barré Syndrome, CIDP, or related variants such as MMN. This full-time position is available starting February, 2018.

The job focus of the Events and Promotions Assistant is to assist in the implementation of all aspects of GBS fundraising and patient support programs including national chapter meetings, fundraising walks, biennial national conference and varying promotional initiatives. Specific tasks will include coordinating assigned aspects of event planning process and logistics including coordination of promotional and sponsorship materials & signage, event setup, permits and equipment needs; volunteer and vendor communication throughout event; report development as requested regarding event attendance, volunteer participation, donations, etc. Duties will also include data management and assistance in implementing e-marketing materials, as needed.

We are a looking for a team player with a “can-do” attitude and outstanding organization skills. We are also seeking a candidate with a good dose of digital savvy & some social media know-how too. The Events and Promotions Assistant will support the Events & Outreach Manager, Fundraising Walks Manager, and report to the Director of Marketing and Communications.

Required Job Qualifications:

  1. 1-3 year of related experience in coordinating events, promotions, or sponsorship exhibits.
  2. A Bachelor’s degree.
  3. Good phone manner and interpersonal skills.
  4. Experience in a fast-paced responsive environment.
  5. The ability to prioritize and meet deadlines.
  6. Keen sense of organization, creative problem solving, and excellent multi-tasking.
  7. Proficient with Microsoft Office.
  8. Familiarity with varied social media platforms including Facebook, Twitter, LinkedIn, Instagram.
  9. Experience in Salesforce, Classy, and Constant Contact is a plus, but willing to train the right candidate.

Interested candidates should submit resume and 3 references to Maureen.Neville@gbs-cidp.org. Deadline for Application is January 19, 2018.

Interlaken Leadership Awards

The Interlaken Leadership Awards support original research in the field of neuroimmunology. Investigators whose proposals are approved by the review committee will receive monetary grants and/or drug supply. The size of the individual grants is not predetermined, in order to accommodate a wide variety of investigator needs. However small innovative trials and pilot studies may be favoured over large confirmatory trials.

Letters of Intent for the 2017 Interlaken Leadership Awards will be accepted from December 19 through Feb 19, 2018.

Full applications will be accepted through April 30, 2018 by invitation only.

Background

Immunoglobulin therapy has a wide range of indications, from the treatment of immunodeficiencies to the control of autoimmune and inflammatory diseases. The number of potential applications for immunoglobulin therapy continues to expand, and recent research has highlighted several promising novel uses.

To demonstrate its continued commitment to innovative immunoglobulin research, CSL Behring has created the Interlaken Leadership Awards.

Mission statement

The Interlaken Leadership Awards program was created to meet the following objectives:

  • To identify new clinical applications for immunoglobulin therapy in the neurology field
  • To further investigate the efficacy, mechanisms of action, and treatment optimization of polyvalent immunoglobulins

Program focus

The current focus of the Interlaken Leadership Awards program is to advance medical research and knowledge about the potential role of immunoglobulin therapy in the treatment of neurological disorders.

Past recipients (2013–2017)

2017

  • Maarten Titulaer (Netherlands): Intravenous Ig (IVIG) treatment for autoimmune epilepsy (AE) with neuronal antibodies.
  • Jean-Philippe Camdessanché (France): Identification, validation, and characterization of novel autoantigens in chronic inflammatory demyelinating polyneuropathy (CIDP).

2016

  • Anneke van der Kooi (Netherlands): Early intravenous immunoglobulin (IVIg) treatment in newly diagnosed idiopathic inflammatory myopathies (myositis): a proof of principle study.
  • Lisa Christopher-Stine (USA): Low Dose Intravenous and Subcutaneous IG for the Maintenance Treatment of Statin-induced Anti-HMGCR-associated Myopathy: A Prospective Pilot Study.

2014

  • Bart Jacobs (Netherlands): Immunoglobulin treatment for patients with mild Guillain-Barré syndrome: an international prospective observational study.

2013

  • Andrew J Pollard (UK): Intravenous immunoglobulin in the management of encephalitis in children.
  • Min-Suk Yoon (Germany): Effects of intrathecal application of human immunoglobulins (Igs) on rat EAN Model.

About CSL Behring

CSL Behring is a global leader in the plasma protein biotherapeutics industry. We research, develop, manufacture and market biotherapies that are used to treat serious and rare conditions. Users of our therapies rely on them for their quality of life and, in many cases, for life itself.

GBS|CIDP Foundation International Named 4-Star Charity Navigator Charity for Sixth Consecutive Year!

 

 

 

 

 

Dear Lisa Butler:

On behalf of Charity Navigator, I wish to congratulate GBS|CIDP Foundation International on attaining the coveted4-star rating for demonstrating strong financial health and commitment to accountability and transparency.

The nonprofit sector is advancing and expanding. As our organizations evolve, so do the desires and interests of our supporters. Astute donors are yearning for greater accountability, transparency, and for concrete results from us. With more than 1.5 million American charities, Charity Navigator aims to accentuate the work of efficient and transparent organizations. The intent of our work is to provide donors with essential information to give them greater confidence in both the charitable decisions that they make and the nonprofit sector.

Based on the most recent information available, we have issued a new rating for your organization. We are proud to announce GBS|CIDP Foundation International has earned our sixth consecutive 4-star rating. This is our highest possible rating and indicates that your organization adheres to sector best practices and executes its mission in a financially efficient way. Attaining a 4-star rating verifies that GBS|CIDP Foundation International exceeds industry standards and outperforms most charities in your area of work. Only 5% of the charities we evaluate have received at least 6 consecutive 4-star evaluations, indicating that GBS|CIDP Foundation International outperforms most other charities in America. This exceptional designation from Charity Navigator sets GBS|CIDP Foundation International apart from its peers and demonstrates to the public its trustworthiness.

Forbes, Business Week, and Kiplinger’s Financial Magazine, among others, have profiled and celebrated our unique method of applying data-driven analysis to the charitable sector. We evaluate ten times more charities than our nearest competitor and currently attract more visitors to our website than all other charity rating groups combined, thus making us the leading charity evaluator in America. Our data shows that users of our site donated more than they planned to before viewing our findings, and in fact, it is estimated that last year Charity Navigator influenced approximately $10 billion in charitable gifts.

Your achievement and the 4-star rating will enhance your organization’s fundraising and public relations efforts. Our favorable review of GBS|CIDP Foundation International’s financial health and commitment to accountability & transparency is now visible on our website.

We wish you continued success in your charitable endeavors.

 

Sincerely,

Michael Thatcher

President and CEO

 

Graham Cassidy Legislation Action Alert – We Need Your Help!

Dear Friends,

As you are well aware, healthcare reform is constantly evolving. Advocacy is one of our four mission pillars and we are committed to representing the patient voice while keeping our community informed. While the Foundation remains non-partisan, our primary focus remains on patient protections and insuring access for necessary treatments.

This current proposal would be particularly harmful to individuals and families impacted by chronic health conditions. The specifics of the Graham Cassidy legislation is outlined in the attached Action Alert. Please contact your Senators and inform them of the impact that this would have on you!

Please take action and let us know if we can assist you in the process!

 

Action Alert

Background

Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), and Ron Johnson (R-WI) recently introduced legislation known as Graham-Cassidy to repeal and replace the Affordable Care Act (ACA). The hope of these lawmakers was to hold yet another vote on repeal before October 1st, so a simple majority (51 votes) is all that is needed to pass the measure. Unfortunately, the Graham-Cassidy proposal is more extreme than other recent Senate proposals and would be particularly harmful to individuals and families impacted by chronic health conditions. Specifically, the new proposal would:

 

  • Allow insurance companies to charge more for those individuals with pre-existing health conditions
  • Allow states to more easily opt out of requiring quality health insurance options and comprehensive benefits
  • Expand the ability for individuals to purchase low quality health insurance benefits in lieu of more comprehensive coverage
  • Eliminate the individual and employer mandates
  • Dramatically reduce the federal commitment to Medicaid expansion
  • Eliminate the Prevention and Public Health Fund

 

While this effort was initially dismissed by many as a “Hail Mary,” it has quickly gained support and could be voted on next week. In order to protect patients with chronic conditions, please contact your Senators and ask them to oppose the Graham-Cassidy repeal and replace proposal.

 

Take Action

  • Contact the health Legislative Assistants (LAs) in the offices of your two U.S. Senators and use the message below for a voicemail or brief e-mail. The contact information for your Senate offices can be found at Senate.gov.

 

Dear _______,

 

My name is _________ and I am a constituent from [home town]. On behalf of patients with chronic health conditions, I urge the Senator to oppose the Graham-Cassidy healthcare proposal. This proposal would be absolutely devastating to individuals and families affected by chronic illness that rely on access to quality, affordable health care.

 

[Explain a little about your particular situation]

 

Thank you for your consideration of my request. Please tell me how you have responded to my request.

 

Sincerely,

[Name]

[Address]

The GBS|CIDP Foundation Announces Three New Members Elected to the Board of Directors

The GBS|CIDP Foundation announces three new members elected to the Board of Directors at the spring Board meeting held near the Foundation headquarters in Philadelphia, PA.  Jim Crone, President of the Board commented, “Gail, Shane and Dominick each bring diverse skills and experiences, which complement the current Board, and we welcome their voice at the table!”

 

Gail Moore is the Director of Global Patient Advocacy at Horizon Pharma, Inc. In this role, Gail connects the leadership of national patient organizations and Horizon Pharma. Prior to this current role, Gail worked in the non-profit sector with the Immune Deficiency Foundation and the United Way of South Florida. Gail’s extensive volunteer experience include work with The Immune Deficiency Foundation, Angels for Life Foundation, the Chamber of Commerce and the Oaks School. Having graduated from Saint Leo University, Gail brings a passion for patient relations, patient access, volunteer recruitment and program design and implementation. Gail resides in Lakeland, Florida.

Shane Sumlin is First Vice President, Investment Officer for Wells Fargo Advisors in Shreveport, LA. Prior to this, he served as a Financial Advisor to Wachovia, A.G.Edwards, and Merrill Lynch. Shane has been awarded with The Premier Advisor designation from Wells Fargo in 2014. Shane’s volunteer experience includes many leadership positions at his church including serving on the Finance Committee.  He also serves as an elected Board member of the Shreveport C.E.O. Organization. Shane is a GBS survivor as well as a volunteer Liaison. He created his own fundraiser in 2014 and has supported the Foundation’s Walk & Roll program with his own team. Shane graduated from Louisiana Tech University and was awarded the Wells Fargo Service Excellence award in 2016. Shane lives with his wife and two children in Shreveport, Louisiana.

Dominick Spatafora is the Director of Advocacy and Professional Relations in the Western region for Pfizer, Inc.  In eleven years at Pfizer, Dominick has focused on identifying, recruiting and managing a portfolio of state and national relationships with key patient, multicultural, business, community and civic organizations for advocacy. Prior to Pfizer, Dominick worked for the Los Angeles County Medical Association and presided over DVS Government Consulting Solutions. Dominick graduated from Arizona State University with a BS and later from The American University with a Master’s in Public Administration. Dominick has held several volunteer leadership positions including the founding of the Neuropathy Action Foundation and serving as the Chair of the Corporate Advisory Committee for the California Medical Association Foundation. As Multifocal Motor Neuropathy ( MMN)  patient, Dominick represents the patient voice with complete understanding. Dominick resides in Marina del Rey, California.

 

The GBS|CIDP Foundation International is the preeminent global non-profit organization supporting individuals and their families affected by Guillain-Barré syndrome (GBS), chronic inflammatory demyelinating polyneuropathy (CIDP), and related syndromes through a commitment to support, education, research, and advocacy. The Foundation has more than 35,000 members throughout 47 countries and has a 19 member Global Medical Advisory Board comprised of the world’s leading physicians in peripheral neuropathy research and patient care.