Posted - November 2010 in HSPRF News
Committee elected for 2011
Excerpt from Minutes of the HSPRF Annual General Meeting
held at Parramatta RSL Club, 10 October 2010.
ATTENDANCE: A quorum of 12 qualified, current members of the Foundation were in attendance. Their names are on record.
Opening, Welcome & Apologies
Confirmation of Minutes from last AGM
Election of Office Bearers & Committee Members
- change in signatories for bank accounts
- resignation of public officer; election of new public officer
APOLOGIES: were received from 8 members, whose names are on record.
CONFIRMATION OF MINUTES from last AGM: A resolution that the minutes of the 2009 AGM in Melbourne be taken as read and confirmed was passed unanimously.
Reference was made to the Annual Report, which had previously been sent to members. President Frank McKeown elaborated on the report with the following comments.
HSP Community – The purpose of the Foundation is to serve the best interests of the HSP community. This outcome is the ultimate reference point in setting priorities and choosing amongst alternative courses of action that the Foundation might take or have available.
Towards a Cure Research Program – the next phase is a two-year research project following on from the successful Pilot Study at a cost of $200,000 to the Foundation. A strategic choice regarding fundraising and deployment of those funds to this purpose has been made. Inaugural President Robin Bligh gave the meeting some background on the research program and on other stem cell research being carried out by the NCASCR at Griffith University.
Gene Testing – the established gene testing service that is available to all Australians at risk of HSP tests for three genes that covers about half of all HSP incidence. In order to provide testing for the numerous other genes/mutations covering the remaining half of HSP cases, the Foundation would need all existing funding to go towards research into developing this testing. The decision was made to continue funding research into a cure for HSP as the higher priority.
There are as yet no feasible alternatives for expanding gene testing coverage here in Australia, however advancements in developing cost-effective technologies for a vastly expanded scope of gene testing are being made at a hectic pace. Our German colleagues have played a major hand in developing testing for around 20 HSP genes. This will be available in Germany in the near future at the same cost as the current test for three genes. We will be following progress and developments very closely so that expanded availability of gene testing within Australia will be realised in the not too distant future, and also because gene testing is a fundamental basis for future stages of research on potential cures.
Developing the HSP Community – the provision of education and information, and the fostering of the HSP community locally, nationally and globally continue to be an important focus of Foundation work. There are significant opportunities for further developing this focus, however there are constraints in expertise, funding and manpower that make it difficult to expand the boundaries and scope of community development.
Foundation Capacity and Expertise – we need to find people who have the time, energy, motivation and expertise to undertake a variety of tasks and projects important to the advancement of the Foundation’s objectives. There are several areas that are under resourced currently, notably fund-raising, communications, publicity and community development.
Reference was made to the Annual Report, which had previously been sent to members. Treasurer Steve Lunn elaborated on the report with the following comments.
The first of the biannual fundraising campaigns in June this year to coincide with the end of the financial year realised around $50,000. We were also successful in an application for funding to a philanthropic trust that brought in another $10,000. Sponsored events such as fun runs are an important source of funds for the Foundation. This giving is normally done via third-party commercial operations who charge about 8% as their fee.
A resolution to accept the Annual Report, including the President’s Report and the Audited Financial Statements was passed unanimously.
The following nominations were received from the floor at the meeting:
President – Frank McKeown
Vice President – open
Secretary – open
Treasurer – Steve Lunn
Committee – Ken Price; Robin Bligh
As there were no other nominations, the candidates nominated are taken to be elected as per the Constitution. Frank made special mention of the outgoing Officers and Committee Members, saying that some of them have served since inception of the Foundation and are deserving of the heartfelt gratitude of everyone in the HSP community and the Foundation.
- regarding signatories to the Foundation’s bank accounts, and
- accepting the resignation of Public Officer, Robin Bligh, on 10/10/10 and that Frank McKeown be appointed as Public Officer
were both passed unanimously.
The minutes were certified to be a true and correct record of the Annual General Meeting of the HSP Research Foundation Inc and that the Annual General Meeting was held with a quorum and in accordance with the HSP Research Foundation Inc. Constitution.
Tour of Old Government House at Parramatta
Prior to the AGM, there was a group tour of Australia’s oldest public building — Old Government House at Parramatta.
The one-hour tour was led by an enthusiastic and knowledgeable guide who gave the group a visceral feel for how the Governor and his family and staff lived at the time. She explained the daily logistics of life and the particular issues of the day regarding crops, food, cooking, clothing, water and bathing, sleeping and eating, and music and other recreational and cultural pursuits. Unfortunately photographs inside the building were not allowed.
The group was also taken on an historical journey through the times of various successive governors and their families, their relationships and attitudes to convicts and to England — all in all a fascinating insight into the birth of our nation.
5th ANNUAL REPORT 2009/’10
to the Members of the HSP Research Foundation Inc.
Towards a Cure for HSP Research Program
We eagerly await final validation of the results of the Pilot Study in anticipation of the commencement of the next phase in the Research Program – a two-year project to identify therapeutic drug candidates for treating HSP. We enjoy a collaborative relationship with the researchers from NCASCR at Griffith University and our fundraising has us well placed to meet our next commitment to them in early 2011. Full details of the Research Program are available on the website at http://www.hspersunite.org.au/stem-cells-hsp/
Drug Discovery & Development
With a view to the future, we are also thinking about future phases in the program. Drug discovery and development is the process that bridges the gap between a potential drug cure being discovered and a drug treatment being commercially available to treat people. This is where the safety and efficacy of a potential cure is established. It is a long and costly process, with no guarantee of a product at the end. We continue to liaise with large pharmaceutical companies and explore the potential for collaboration and partnership ahead of this phase.
Genetic Database / Clinical Trials
The other main focus for the future is the need to have enough HSPers and their genetic information in a uniform global database. This is necessary because no one country will have enough HSPers for the clinical trial phase of any potential cure. There will need to be global collaboration to implement the clinical trials. Different researchers around the world doing different studies over the years have collected genetic mutation data from their HSP subjects. To be most useful and effective, there needs to be consistency and uniformity in the data, in the way it is recorded and as a minimum, compatibility in the software and systems where the data resides. Now is the time to start working towards an effective, uniform global database.
The testing service has made some changes. They now offer testing and screening for SPG4, SPG3A and SPG31. The cost structure has also increased somewhat, but remains cheap by global standards. HSPers thinking of getting tested are strongly encouraged to see a genetic counsellor first. One of the issues you can explore with your counsellor is the feasibility of getting tested as a public outpatient in a public hospital. In some cases, this may significantly reduce or even eliminate out of pocket expenditure. Health card holders pay nothing.
For those who test negative to the three gene tests offered, but who almost certainly have HSP and would like to know which type, there is no easy answer at this point to determining that. As reported last year, scientific and technical advances in gene testing continue at a hectic pace. Our German friends have just achieved a technological breakthrough and next year expect to offer their HSP community testing for about 20 HSP genes at roughly the same cost as the current test for three.
Developing the Australian HSP Community
During calendar 2010 to date, we have had a very pleasing increase in the number of people who have joined the community. We now have over 280 community members, up from around 200 at the start of the year. Knowing that there are around 1,500 HSPers in Australia, we still have a long way to go to reach out and support every one who can benefit from joining the HSP community.
Information and Education
Information and education of the HSP community are two important aims of the Foundation. This is largely done through the website, which is now a significant resource and library for information and education. Web statistics show that a significant percentage of site traffic is international – mainly the US, the UK and Germany – but around 50 different countries in total. This year the Foundation will hold a Workshop at the National Centre for Adult Stem Sell Research, our research provider, on November 7th and hopefully attract HSPers from southeast Queensland and northern New South Wales. It is our intention to hold a Workshop in the second half of 2011 in Adelaide.
During the past year, at the invitation of our US counterparts, we informed community members about a global database <http://freyerse.org> for people with HSP and similar diseases. The visual interface is a global map on the website, and this can be magnified right down to local level so that people can see who in the community lives near them and to make contact with them. Of course it also allows relationships to be developed at a distance.
There is a significant demand for more connection between community members and this holds a lot of potential and promise. It does require active participation from community members to list and locate yourselves on the database and we will continue to promote this to encourage ever increasing participation.
Committee members will be personally contacting all community members for whom we have a phone number twice a year. This is to give you the opportunity to talk and hear about issues of interest to HSPers. It will also help keep committee members in touch with the community and aware of relevant issues.
The numbers of inquiries, both by phone and e-mail have steadily increased this year and cover a range of topics. We are committed to providing quality information and personal responses to all enquiries. We are also attracting enquiries from outside Australia as people everywhere are finding our website useful and helpful.
Running the Foundation
Electronic communications – only around 40 of our 280 strong community have not provided us yet with an e-mail address. Postal mail is time-consuming and expensive. At every opportunity we are using e-communications with community members, with postal mail being a backup for those without e-mail. However postal mail recipients do not receive quarterly updates and certain other communications that are only transmitted electronically. Everyone is encouraged to provide us with an e-mail address, and for those community members for whom e-mail is not feasible, please explore the possibility of receiving e-mails via family or friends.
The challenge of every small non-profit, us included, is how to be effective and businesslike so that scant resources can be well employed when we are totally run by volunteers? This year we have made a significant investment of time and expertise in developing processes, systems and technologies to make us more effective and businesslike.
Website Development – the website got a new look in June, and increased functionality with the opportunity for more interactivity. This was a major undertaking with software and other technical back-end changes as well. Heartfelt thanks to Isaac Nakhla, our dedicated Web designer and technician, for his diligent pursuit of the quality product we now have.
Database Development – the database is being shifted from a software/desktop environment to being Web-based allowing much easier access and use to committee members/project workers who need it. We are being well supported in this process by Ryan Keating, who like Isaac has no connection with HSP, but a keen sense of contributing to society and selflessly doing good. Ryan, Thank You!
Process & Systems Development – development or revision is in progress with processes and systems for handling membership enquiries, general enquiries, correspondence, communications initiative/data gathering, fundraising campaigns, and donations receiving/tracking/receipting. There is a considerable way to go however we are confident that we are already achieving more consistency, more uniformity and increased quality in how we do business in these areas.
Give Generously Campaigns
The first of the biannual ‘Give Generously’ fundraising campaigns was conducted in June this year with almost $50,000 raised from within the HSP community. This campaign is designed to coincide with the close of the tax year so that people can claim immediate deductions for their charitable contribution to the Foundation. The Christmas campaign will be conducted in late November/early December each year.
One of the challenges we face is expanding the base of contributors to the Foundation. This needs to happen in two ways:
- ‘Inner Circle’ – this is how we describe people in the HSP community/Foundation members. We are very aware that this is a finite resource, however the reality is that less than 20% of our community contribute. We need to find a way to engage the other 80%, not just because it will mean more funds, but will reflect an informed community with a willing spirit, no matter how much they are able to give.
- ‘Outer Circle’ – this is how we describe people outside the HSP community. This includes extended family, relatives, friends, colleagues and the communities in which HSPers live. As far as the future is concerned, we must find ways to appeal to this group so that they are motivated to contribute. We have barely scratched the surface with potential fund-raising initiatives instigated by community members with this outer circle. The challenge is to encourage community members to fund raise on behalf of the Foundation. Whether it is a barbecue or a birthday, trivia night or cake bake or something more adventurous – we all need to be thinking about ways to engage the broader community in contributing to the cause. There may also be publicity/awareness opportunities with these sorts of activities as well. The other advantage of the outer circle is that the potential and limits are boundless in terms of who we can reach and the funding we can raise.
Event fund-raising through sponsorships continues to be a significant source of Foundation income. Fun runs such as Sydney’s City 2 Surf, Adelaide’s City – Bay, the Gold Coast Half Marathon and so on are very important as we see HSPers doing extraordinary things which is good for us all; funds are raised largely from outside the community via participants’ family & relatives, friends, colleagues and community; and it is a rare chance to get some publicity and raise awareness of HSP and HSPers.
We had some success submitting applications for grant funding for research in 2009/’10. We have recently been advised that our application to the Flack Trust was successful and they awarded us $10,000.
We have significantly improved the process of targeting funding bodies most likely to view our submissions favourably. We have compiled a much improved database with the result that we are submitting a significantly greater number of applications. The diligence and quality of our submissions on several dimensions is now also significantly better. With patience and persistence, we are confident that we will be more successful in the future.
We are proud that over 95% of all money raised goes to fund research, and also proud of the fact that this can only happen because we are a 100% volunteer organisation.
There are two areas that need more attention in the future:
1. ‘Living with HSP’ including mobility management, lifestyle maintenance, medical and mechanical options, maintaining good mental health, getting and keeping fit, and so on are vitally important to the quality of life of people in the HSP community. There is little or no direct funding from anyone anywhere to advance knowledge and practice relating to these topics, however there is a vast pool of relevant expertise and resources that can be better organised and accessed.
2. Creating awareness of HSP and HSPers with stakeholder groups such as those medical and paramedical professionals most relevant to HSP, funding bodies, and society at large is a challenge. Mass media opportunities are rare and hard to create. Currently we lack expertise and application to the topic of publicity, but will address this issue over the coming year.
A Summary of the Audited Financial Report of the Foundation for the 2009/’10 financial year follows on the next two pages. We have the capacity to meet our current and foreseeable commitments including research funding and are confident of our continuing financial good health into the future.
On behalf of every one in the HSP community, I extend my thanks to the committee members of 2009/10 who volunteered their time to run the business of the Foundation and paved the way for a brighter future.
Special thanks and acknowledgement are due our inaugural president and prime mover in the establishment of the Foundation, Robin Bligh. Without his energy and vision, the Foundation would not be the success that it is and will become. Robin stepped down during the year for a well-earned retirement, however I can personally attest that he almost daily attends to Foundation business and leads the charge in identifying and applying to philanthropic institutions for grants to fund our stem cell research. Robin, our hats are off to you!
Comments or Feedback
I submit this Annual Report to you the members of the HSP community and the Foundation in good faith and with optimism and confidence that we are currently fulfilling our mission and achieving worthwhile goals, and have a high expectation of continuing that into the future.
I welcome any comments or feedback, thoughts or ideas, or questions that you may wish to ask. E-mail me at [email protected]
HSP Research Foundation Inc.