The Alpha One Foundation is recruiting a new Chief Executive Officer to lead a small team of dedicated staff and co-ordinate policy implementation, operations, fundraising, financial control, media strategy, communications with and support of Alpha-1 individuals and who will deliver a range of public engagement and advocacy responsibilities.

ROLE OF CHIEF EXECUTIVE OFFICER

The role of the CEO is to lead, develop and manage the Alpha One Foundation, a medical charity dedicated to improving the quality of life of Alpha-1 individuals in Ireland. The Chief Executive reports to the Board of Directors and leads a team covering clinical services, diagnostic, research, and administration functions. The Chief Executive will have overall responsibility for the development, implementation and continual review of the organisation’s operational strategy while leading the delivery of services in full compliance with all legal and statutory frameworks. The remit of the Chief Executive is broad with respect to day to day activities.

Operations and Management

  • Prepare a strategic plan and annual budget for approval by the Board of Directors
  • Operate within the annual budget and ensure management and HR policies are up-to-date
  • Establish and monitor key indicators of the organisation’s impact and financial health
  • Ensure the effective and smooth operation of the services and supports provided by the Alpha One Foundation
  • Lead the Alpha One Foundation staff to ensure they deliver the Board’s priorities and policies
  • Manage the appraisal and development of staff to maximise their potential and use resources to the best advantage
  • Ensure the efficient running of the office

Policy and Representation

  • Represent the organisation in the media and public domain
  • Build relationships with politicians, media, government officials, statutory bodies, voluntary bodies, private bodies, individuals and other external stakeholders including the Alpha-1 Foundation (U.S.) in order to advance the organisation’s aims
  • Maintain awareness of risks and changes in the external environment that affect the organisation
  • Establish mechanisms for listening to the views of Alpha-1 patients

Effective Governance

  • Prepare and provide an annual report for the Alpha One Foundation
  • Supply reports to the board and attend board and sub-committee meetings
  • Ensure the organisation’s staff are focused on achieving its mission and aims
  • Ensure the organisation fulfils its legal, contractual, statutory and regulatory responsibilities
  • Deliver the organisation’s business plan and, if necessary, help the organisation to win contracts from public or funding bodies

CANDIDATE PROFILE
It is desirable that applicants will have a relevant third level qualification in healthcare, business or clinical management as well as a number of years’ experience in a senior management role in a similar organisation. They will have excellent leadership, communications and financial skills as well as the ability to manage an organisation that supports and represents a patient population. They will have a vocational understanding of the ethos of care in the healthcare and charities sector. Experience in medical or scientific research is an additional advantage.

HOW TO APPLY
To apply for this position please submit a copy of your full Curriculum Vitae with a cover letter outlining why you are the right person for this role. Applications must be submitted to Ms. Geraldine Harte, This email address is being protected from spambots. You need JavaScript enabled to view it.. Applications will be treated with the strictest of confidence.

The closing date for application is 5.30pm on Friday, May 5th 2017. For informal enquires about the role you may contact Kitty O’Connor on 01-8093871.

ABOUT THE ALPHA ONE FOUNDATION
Based at RCSI Beaumont Hospital, the Alpha One Foundation is a charity founded in Ireland in 2001 to raise awareness, increase diagnosis, promote research, and improve the treatment of Alpha-1 Antitrypsin Deficiency (Alpha-1). Alpha-1 is one of the most common inherited conditions in Ireland. It is a genetic condition that can cause severe lung and liver problems. The Alpha One Foundation aims to increase awareness and improve the treatment of Alpha-1 by:

  • Conducting the National Targeted Detection Programme for Alpha-1
  • Promoting early diagnosis of Alpha-1 individuals
  • Providing comprehensive patient support
  • Co-ordinating the National Alpha-1 Registry
  • Providing access to clinical trials for emerging therapies
  • Participating in scientific research and development
  • Supporting the National Alpha-1 outpatients clinic at Beaumont Hospital
  • Promoting health policies that improve the quality of life of Alpha-1 individuals in Ireland

 AOF activities

Alpha-1 patients receiving the life-changing therapy Respreeza protested outside the offices of the Health Service Executive (HSE) at the end of February to demand that the HSE and Minister commit to long-term funding of the drug. The patients said the treatment is highly effective and had changed their lives after the HSE agreed to engage in discussions with the company who supply the drug. 

Josephine Orla Gerry HSE

Respreeza is used to treat emphysema caused by severe Alpha-1, which is particularly prevalent in Ireland. 21 patients have been receiving the therapy during the past 10 years, initially as part of a clinical trial and more recently on ‘temporary’ compassionate grounds from the drug company, while a funding case was being made to the HSE. Despite continued lobbying by patients, their families and their representative organisation the Alpha One Foundation, the HSE has thus far declined to fund the treatment – as was confirmed in early February in the Oireachtas by HSE Director General, Tony O’Brien. The drug company supplying the treatment on compassionate grounds to 21 patients was due to cease supply at the end of February, but yesterday announced a stay of a further two months until the end of April.

The Chairperson of the Alpha One Foundation Professor Gerry McElvaney, CEO Kitty O’Connor and several Alpha-1 patients met with HSE officials on February 23rd to discuss the matter. Speaking after the meeting, Ms O’Connor confirmed that the HSE had agreed to engage directly with the drug company CSL Behring to see if a resolution could be reached. She welcomed this development from the HSE and encouraged that all avenues be explored. She also called on CSL Behring to lift the two month deadline and for the necessary time to be allowed for the HSE and company to engage and negotiate.

“It is the Minister for Health’s responsibility to ensure the health of our citizens. It is also important to remember this issue involves more than the 17 people in the Republic of Ireland (and 4 in Northern Ireland) who have had the benefit of Respreeza to date. What about the other estimated 40 who could potentially benefit – shouldn’t they have a chance of a better life too?

Alpha-1 patient Gerry Finnerty, who was part of the delegation which met with the HSE, said he was in no doubt about the difference Respreeza had made to his life. “I have a right to live. Without this treatment I might not be alive. This drug is necessary and is proven. It has been approved by the European Medicines Agency and is approved in eight other EU countries,” he said.

Another Respreeza user John Hannan from Cork was also in no doubt about the treatment. “Respreeza works. I would not be here today without this treatment. Health Minister Simon Harris needs to meet with Respreeza patients and hear what we have to say,” he said.

Speaking about the proven effectiveness of Alpha-1 Kitty O’Connor continued: “Respreeza is the only therapy to have been shown to slow the progression of emphysema caused by severe Alpha-1. This was demonstrated in the RAPID study which featured 180 patients and was conducted in 13 countries worldwide under the supervision of 29 principal investigators. Published in The Lancet in July 2015, the study found those treated with Respreeza saw a 34 per cent slowing down in the progression of their emphysema.

“In further research undertaken by the Alpha One Foundation, these patients on Respreeza also reported a decrease in the frequency and severity of chest infections and associated hospital admissions. Respreeza is a drug that has been approved by the European Medicines Agency and which is already available to patients in eight European countries – Italy, France, Germany, the Czech Republic, Austria, the Netherlands and Spain – as well as in the United States. The European Medicines Agency and these other countries can see the benefits, so why can't the Minister?”

About Respreeza
Respreeza is a medicine for use in adults with emphysema caused by alpha-1 antitrypsin deficiency, an inherited disorder that can cause lung problems such as emphysema and COPD and which may also affect the liver and skin. It works by replacing the protein that is lacking in patients with alpha-1 antitrypsin deficiency and slows down damage to the lungs in patients with severe disease. It is delivered once-weekly by intravenous infusion.

To read more about Respreeza and the RAPID study click here.

We were deeply saddened to hear of the passing of John Walsh, co-founder and CEO of the US Alpha-1 Foundation on Tuesday, March 7th. John was an inspirational leader for the Alpha-1 community not just in the USA but worldwide. A tireless advocate for Alpha-1 and the search for a cure, John’s enthusiasm was infectious and his warm personality opened many doors in the name of Alpha-1. He was very proud of his Irish roots and was a frequent visitor to Ireland. John was a tremendous support to the Alpha One Foundation in Ireland and a trusted friend. In October 2014 John was a special guest speaker at our Annual Alpha-1 Conference and everyone who heard him speak that day left with a spring in their step. He will be sorely missed by all of his friends here in Ireland. Condolences to his wife Diane, his daughter Linda and the rest of John’s family.

Ar dheis Dé go raibh a anam dílis.

To read more about John’s amazing life and career, visit http://www.alpha1.org/remembering-john-walsh.

John Walsh visit2 Nov 2010 

John Walsh with Professor Gerry McElvaney on his visit to the Alpha One Foundation in Dublin in 2010.

JWV 1

John addressing a lecture hall packed full of Alpha-1 researchers in Dublin in November 2010. 

JWW Prof Josephine Orla Chopin 2010
John attending the Chopin Recital in aid of Alpha-1 in the Mansion House in Dublin in November 2010. Pictured are Professor McElvaney, Orla Keane, John Walsh, and Josephine McGuirk.

John wife Diane Chopin Alpha1 Recital Dublin Nov2010

John with his wife Diane at the Chopin Recital in Dublin in November 2010.

John Irish Delegation A1F International Congress 2013

John pictured with Angela McBride and the Irish delegation at the 4th International Patient Congress held in Barcelona in April 2013.

John and McElvaney team ATS 2014

John with Professor McElvaney and his team of Alpha-1 Researchers at the Alpha-1 Foundation Award night at the American Thoracic Society meeting in May 2014.

John AOF conference Dublin 2014

John speaking at the Alpha One Foundation Annual Conference in Dublin in 2014.

 

 

What is Alpha-1 Antitrypsin?
Alpha-1 antitrypsin is a vital protein produced by the liver to protect the lungs. It provides protection from the harmful effects of infections and inhaled irritants, particularly tobacco smoke. It can be easily measured by a simple blood test. 
What is Alpha-1 Antitrypsin Deficiency?
Alpha-1 antitrypsin deficiency (Alpha-1) is a genetic condition which, after cystic fibrosis, is the commonest genetic disorder in Ireland. It severely affects more than 15,000 people, with another 250,000 carriers also at risk of lung and liver disease on the island of Ireland. It is a proven genetic risk factor for chronic obstructive pulmonary disease (COPD).
How Do I Get Tested?
The Alpha One Foundation provides free testing for Alpha-1 as part of a national screening programme which is funded by the HSE. For more details ring 01-8093871 or email alpha1@rcsi.ie.