Jeans for Genes Day Genetic Disorders UK Guidance for Applicants JEANS FOR GENES DAY Supporting families affected by genetic disorders
Contents 3 Jeans for Genes Day / Genetic Disorders UK 4 The 2015 Grant Programme 5 Guidance on applying for a grant 7 Grant conditions 8 Grant collaboration framework 9 The grant process 10 Appendix A Standard Terms and Conditions of Jeans for Genes Day / Genetic Disorders UK grants 12 Appendix B Guidance for shortlisted charities when presenting their applications 2
Jeans for Genes Day / Genetic Disorders UK Genetic Disorders UK is a national charity with a vision to improve the lives of individuals and families affected by genetic disorders in the UK. Established in April 2011, Genetic Disorders UK organises the annual Jeans for Genes Day fundraising event when children and adults are encouraged to wear their jeans to school or to work in exchange for a small donation. The aim of the Jeans for Genes Day / Genetic Disorders UK grant programme is to offer support groups and charities that care for children affected by a genetic disorder the opportunity to secure funding for a project that will make a tangible difference to their members. For further information on our grant programme and to see details of past recipients, please visit www.geneticdisordersuk.org/grantprogramme 3
The 2015 Grant Programme Genetic Disorders UK is now accepting applications from UK based support groups and charities for grants ranging from 500 to 25,000 that will be awarded from the proceeds of Jeans for Genes Day 2015. Successful applicants will be organisations that support children and families affected by genetic disorders or projects that support children and families affected by genetic disorders. Applicants must meet the eligibility criteria for their project to be considered. At Genetic Disorders UK, we believe that no genetic disorder is too rare or project too small. Applications for grants will be considered by an independent panel made up of experts from the media, business and genetic disorder communities. Applications are divided into two groups: 1. Grants of less than 4,999 All applications requesting grants of 4,999 or less that meet the eligibility criteria will be considered by the panel. Applicants will not be requested to present details of their projects to the panel although they may be asked to provide additional information before the panel meets. 2. Grants of more than 5,000 The 16 strongest applications for grants of more than 5,000 will be shortlisted and invited to present to the panel in central London on either Wednesday 19th or Thursday 20th November 2014. Please note that these dates are fixed. If a representative from your organisation is unable to attend the presentations due to unforeseen circumstances, the panel will consider the application form alone. The timeline for applicants is as follows: 1st July to 30th September 2014 15th October 2014 19th and 20th November 2014 15th January 2015 Applications will be accepted during this period. All applications must be submitted by email before midnight on 30th September 2014. Applications received after this date will not be considered. Shortlisted applicants will be notified and may be asked to submit additional materials, including their organisation s financial accounts. Panel presentations in London for applicants requesting grants of 5,000 or more. All applicants will be notified as to whether they have been awarded a grant. 4
Guidance on applying for a grant We regard our grant programme as an opportunity to create a partnership with the support groups and charities that receive a grant. We are keen to fund a wide range of well-designed projects that will make a tangible difference to children and families affected by genetic disorders. As part of our public relations activity in the run-up to Jeans for Genes Day, we will seek to publicise the stories of children and families who will benefit from the activities that our grants will fund. The aim of telling these stories is to both inspire supporters and promote fundraising. It means that brief details about your project may appear on the Genetic Disorders UK and Jeans for Genes Day websites, in printed materials, in media coverage and/or on advertising. Eligibility Criteria To be considered for a grant all projects must meet the following criteria: The project is submitted by a UK-based support group or UK-registered charity working with children (18 or under) affected by genetic disorders: We recognise that it is not always possible for those supporting children and families affected by a genetic disorder to have established a charity. This may be because there are too few people in the UK affected by a disorder or because a support group is in the earlier stages of starting up. Genetic Disorders UK will accept applications from support groups working on behalf of children and families affected by a genetic disorder if they are endorsed by a medical professional with recognised expertise in the disorder. The project must benefit children (18 or under) affected by genetic disorders: Genetic Disorders UK will accept applications from support groups and charities looking after both adults and children as long as the focus of the grant is for children. We will also accept applications from special needs organisations such as playgroups, therapy classes or special schools that provide services to children with a wide range of conditions. This is as long as the beneficiaries of the project are children and families affected by genetic disorders. If your charity or support group would like to propose a project specifically for children and families affected by genetic disorders, please provide the number of children and types of disorders that it will benefit. The proposed project is of one year s duration or less: Jeans for Genes Day is an annual fundraising event and therefore project objectives must be achievable within a year e.g. we will consider funding a year s salary for a key worker when outcomes of their role can be clearly defined in that time. Please note when scheduling your project that this grant will be paid from the proceeds of Jeans for Genes Day 2015 which will take place in September 2015. The first 5,000 of the grant will be paid in December 2015 and the outstanding balance will be paid in March 2016. The proposed project will take place in the UK and/ or will benefit UK families: The grant must be used by a UK-based charity or support group to fund an activity that will either take place in the UK or will benefit UK families. We recognise that for many of the rarer genetic disorders there may be only a handful of affected individuals living in the UK and that for these families, the most important conferences and events might be held outside the UK. In these instances we would consider providing a grant for an activity outside the UK, provided that UK children and families are key beneficiaries of the grant. 5
Guidance on applying for a grant (continued) The project s activities are tangible and identifiable: Could we send a photographer along to take a picture of your project s activities? Could we show that something has been newly created? Could we clearly outline what knowledge has been gained? If so, please mention this in your application. Please note that we will not fund general education or information publications such as leaflets for GPs. The size of the Jeans for Genes Day / Genetic Disorders UK grant can make an acknowledgeable impact on the project: The panel is willing to consider the complete or partial funding of a project. However, the grant must make a significant difference to the size or quality of the project. For example, we would not award a 25,000 grant as part of a 200,000 project because the impact of our grant would be insignificant to the delivery of the overall project. (If applicable) The support group or charity has a child protection policy in place: For projects that involve working with children, Genetic Disorders UK would expect that your charity has appropriate child protection policies. If your support group or charity does not have such policies in place, we would strongly recommend that you liaise with the National Society for the Prevention of Cruelty to Children (NSPCC) in order to formulate one. The NSPCC can be contacted by telephoning 0808 800 5000 or by visiting the website www.nspcc.org.uk and can provide help and advice for charitable organisations working with children. If your support group or charity is awarded a grant for a project involving children, we will require you to confirm that your organisation has a child protection policy in place. While we do not fund laboratory-based research, we will accept applications for clinical research projects as long as the project has been independently peer reviewed and a copy of the review findings are included with your application. Please also note the following: Genetic Disorders UK defines a genetic disorder as one that is caused by a single gene mutation or chromosome alteration. We recognise that there are genetic components to complex conditions such as autism and dyslexia, and to many types of cancer, but we are unable to consider these conditions as eligible for our grants. We can only accept one grant application per support group or charity each year. Due to the large volume of applications we receive for our grant programme, and our wishes to fairly distribute grants to as many worthwhile projects as we can, we are unable to accept applications from charities or support groups who received a grant the previous year i.e. if you received a grant in 2014, you will not be eligible to receive a grant in 2015. We understand that due to the nature of some genetic disorders, it may not be possible for certain support groups and charities to provide media case studies as part of the grant collaboration framework (see page 8). If you would like to make an application for a grant but are concerned that your support group or charity will not be able to find families who are willing to talk to the media, please do contact us before submitting your application. 6
Grant conditions In order to receive a grant from Genetic Disorders UK, each successful support group or charity has to fulfil the requirements of our Grant Collaboration Framework. This framework details the support that Genetic Disorders UK requires from each successful applicant in relation to the size of the grant awarded. Please review the Grant Collaboration Framework before completing your application form. We have tried to ensure that these requirements are not too onerous for support groups and charities but if you have any concerns about being able to fulfil these obligations, please contact us. We do understand that the nature of some genetic disorders makes it very difficult for support groups and charities to provide case studies and this is not a problem if it is discussed with us in advance. If you are awarded a grant and do not work in partnership with us to fulfil the requirements of the grant collaboration framework, the offer of the grant will be withdrawn. Successful applicants will also be expected to adhere to the Standard Terms and Conditions of Jeans for Genes Day / Genetic Disorders UK grants (see Appendix A). 7
Grant collaboration framework Unless otherwise agreed in advance, successful applicants will be required to support Jeans for Genes Day / Genetic Disorders UK as detailed below. The size of the grant awarded will affect the level of support required. This framework exists as a contractual obligation. GRANT 500 1,499 THE SUCCESSFUL SUPPORT GROUP OR CHARITY WILL: Provide one case study to be used in Jeans for Genes Day / Genetic Disorders UK publications, school packs and/or media by 15th February 2015 Support Genetic Disorders UK with additional photography or filming to promote the project Promote Jeans for Genes Day / Genetic Disorders UK in all communications during the six months leading up to Jeans for Genes Day 2015 Display the Supported by Jeans for Genes Day / Genetic Disorders UK logo on the front page of applicant website at least from 1st April 2015 until the completion of the project Acknowledge Jeans for Genes Day / Genetic Disorders UK as the source of funding for the project Complete an End of Grant Report within three months of the project ending 1,500 4,999 Provide three case studies to be used in Jeans for Genes Day / Genetic Disorders UK publications, school packs and/or media by 15th February 2015 Support Genetic Disorders UK with additional photography or filming to promote the project Promote Jeans for Genes Day / Genetic Disorders UK in all communications during the six months leading up to Jeans for Genes Day 2015 Display the Supported by Jeans for Genes Day / Genetic Disorders UK logo on the front page of applicant website at least from 1st April 2015 until the completion of the project Acknowledge Jeans for Genes Day / Genetic Disorders UK as the source of funding for the project Complete an End of Grant Report within three months of the project ending 5,000 9,999 Provide four case studies to be used in Jeans for Genes Day / Genetic Disorders UK publications, school packs and/or media by 15th February 2015 Support Genetic Disorders UK with additional photography or filming to promote the project Promote Jeans for Genes Day / Genetic Disorders UK in all communications during the six months leading up to Jeans for Genes Day 2015 Display the Supported by Jeans for Genes Day / Genetic Disorders UK logo on the front page of applicant website at least from 1st April 2015 until the completion of the project Acknowledge Jeans for Genes Day / Genetic Disorders UK as the source of funding for the project Complete an End of Grant Report within three months of the project ending 10,000 14,999 Provide five case studies to be used in Jeans for Genes Day / Genetic Disorders UK publications, school packs and/or media by 15th February 2015 Support Genetic Disorders UK with additional photography or filming to promote the project Promote Jeans for Genes Day / Genetic Disorders UK in all communications during the six months leading up to Jeans for Genes Day 2015 Display the Supported by Jeans for Genes Day / Genetic Disorders UK logo on the front page of applicant website at least from 1st April 2015 until the completion of the project Acknowledge Jeans for Genes Day / Genetic Disorders UK as the source of funding for the project Complete an End of Grant Report within three months of the project ending 15,000 25,000 Provide five case studies to be used in Jeans for Genes Day / Genetic Disorders UK publications, school packs and/or media by 15th February 2015 Support Genetic Disorders UK with additional photography or filming to promote the project Promote Jeans for Genes Day / Genetic Disorders UK in all communications during the six months leading up to Jeans for Genes Day 2015 Display the Supported by Jeans for Genes Day / Genetic Disorders UK logo on the front page of applicant website at least from 1st April 2015 until the completion of the project Acknowledge Jeans for Genes Day / Genetic Disorders UK as the source of funding for the project Complete an End of Grant Report within three months of the project ending 8
The grant process Step 1: Read through this Guidance for Applicants, paying careful attention to the type of organisations and activities we fund. Please note that we cannot consider applications that fail to meet all of our eligibility criteria. Step 2: If your organisation and proposed project meet our eligibility criteria, complete the 2015 Grant Application Form. Complete the form in full and obtain the required signatures. Please note that we cannot consider incomplete forms or any additional attachments beyond the application form (with the exception of peer review findings for research applications). Step 3: Submit your completed application by email to grants@geneticdisordersuk.org before midnight on Tuesday 30th September 2014. We are sorry but we cannot consider applications received after this date. Send the complete application form with the appropriate signatures by post to: 2015 Grant Programme Genetic Disorders UK 199A Victoria Street London SW1E 5NE Step 4: All applications requesting grants of 4,999 or less that meet the eligibility criteria will be considered by the panel. The 16 strongest applications for grants of more than 5,000 will be shortlisted and invited to present to the panel in central London on either Wednesday 19th or Thursday 20th November 2014. Those organisations invited to present to the panel are advised to read Appendix B of this guide that details how grant applications are evaluated by the panel and offers presentation tips. It should be noted that the panel may decide to award either partial or complete funding of the requested amount. In some circumstances, the panel may also decide to increase the size of the grant that the charity asks for. Step 5: Applicants will find out if they have been awarded a grant by 15th January 2015. Step 6: Grants of 4,999 or less will be paid in full in December 2015. Grants of 5,000 or more will be paid in two instalments: an initial payment of 5,000 in December 2015 and the balance in March 2016. Please note that we are unable to transfer grant monies to an individual s bank account. Newly established support groups must ensure that a bank account is set up in the group s name before funds can be transferred. If you have any queries about the grant programme or application process, please email grants@geneticdisordersuk.org 9
Appendix A Standard Terms and Conditions of Jeans for Genes Day / Genetic Disorders UK grants 1. GENERAL Definitions: Day means Jeans for Genes Day operated by Genetic Disorders UK (GDUK) for the period 1st April 2015 to 31st March 2016; Grant means all monies given by Genetic Disorders UK to the Recipient in accordance with these Standard Terms and Conditions and no other monies whatsoever; the Primary Contact Person shall have the meaning given in clause 2 (l); the Project refers to the project or activities as detailed in the grant application form attached to these Terms and Conditions; the Recipient means the organisation specified in the letter from Genetic Disorders UK confirming the award of the Grant and shall, where appropriate, include reference to authorised employees and agents of the Recipient. However, such dates are estimates only and time shall not be of the essence for payment of the Grant. Genetic Disorders UK will not accept liability, of any nature, for any losses or costs (whether foreseeable or not) arising from any failure to make any Grant payments on any agreed date or otherwise. If the Recipient is in breach of any of these Standard Terms and Conditions, or goes into insolvent liquidation, or has a receiver appointed over its assets or any part thereof, or makes any composition with its creditors, Genetic Disorders UK may refuse to pay any further Grant payments due. (h) The Recipient shall comply with all applicable laws and regulations whether or not relating to the Project. In particular, the Recipient shall comply with applicable legal requirements relating to the collection, use, safe-keeping and distribution of personal data and to disclosing the charitable status of Genetic Disorders UK and the Recipient in fundraising or publicity material. 2. OBLIGATIONS OF THE RECIPIENT (a) The Grant must be used exclusively for the Project. But the Recipient may use up to ten per cent of the Grant for administration costs incurred by it including, but not limited to, selecting, monitoring, auditing and reporting back on the Project. (b) No material change to the Project or its implementation may be made without the prior written consent of Genetic Disorders UK, such consent not to be unreasonably withheld or delayed. (c) The Grant will not be increased if there is an overspend on the Project. (i) (j) (k) For the duration of the agreement reflected in these Standard Terms and Conditions, the Recipient will do nothing that would or might bring Genetic Disorders UK into disrepute or which might damage the goodwill attached to the Genetic Disorders UK or Jeans for Genes logos or their distinctiveness. In all publicity relating to the Project, the Recipient will ensure that it states as a minimum Our thanks to Genetic Disorders UK/ Jeans for Genes Day for funding this project. The Recipient agrees that Genetic Disorders UK may use its name and logo in any publicity material relating to Jeans for Genes Day (including references to the Day in publicity material for any similar future appeals). (d) The Grant must be shown in the Recipient s annual accounts as a restricted fund and not included under general funds. This means that the unspent funds and/or assets in respect of this Grant must be shown separately in the Recipient s accounts. (e) The use of any underspend accumulated within a twelvemonth period of the Grant must be agreed with Genetic Disorders UK. If at the end of the Project the Recipient has spent less, then the unspent amount must be returned to Genetic Disorders UK promptly. (f) The Recipient must not, without prior written agreement of Genetic Disorders UK, change its constitution as regards its purposes, payments to members of its governing body, distribution of its assets (whether on a dissolution or not) or admission of members (where it has a membership). (g) Genetic Disorders UK expects to make Grant payments in accordance with the time frame set out in the Grant Programme 2015 Guidance for Applicants document on the Jeans for Genes Day / Genetic Disorders UK Grant Programme website www.geneticdisordersuk.org/grantprogramme (l) The Recipient will ensure that the Primary Contact Person named in the grant application is easily contactable and responds adequately and in reasonable time to all reasonable requests made by Genetic Disorders UK. The Recipient will promptly notify Genetic Disorders UK of any change in the identity of and/or contact details for the Primary Contact Person. (m) The Recipient agrees to publicise Jeans for Genes Day to its members and supporters and to encourage maximum participation in the Day according to the requirements set out in the Grant Collaboration Framework that is part of the 2015 Grant Programme Guidance for Applicants and available at www.geneticdisordersuk.org/grantprogramme (n) The Recipient agrees to keep confidential all information that it receives about Genetic Disorders UK and Jeans for Genes Day, other than information that is in the public domain or intended for use in marketing the Day or that the Recipient possesses before applying for the Grant. 10
Appendix A Standard Terms and Conditions of Jeans for Genes Day / Genetic Disorders UK grants (o) The Recipient will immediately upon receipt pass any and all donations that were intended for the benefit of Genetic Disorders UK or Jeans for Genes Day directly to Genetic Disorders UK. This includes any details in its possession relating to the donor together with any Gift Aid declaration made by them. (p) The Recipient shall comply with the relevant requirements of the Grant Collaboration Framework that is part of the 2014 Grant Programme Guidance for Applicants and available at www.geneticdisordersuk.org/grantprogramme 3. GENETIC DISORDERS UK AND JEANS FOR GENES DAY NAMES AND LOGOS (a) Subject to clause 3 (c) below, the Recipient may use the Genetic Disorders UK and Jeans for Genes Day names and logos, but only in connection with the Grant. (b) The Recipient will not acquire any other rights to use the Genetic Disorders UK and Jeans for Genes Day names and logos, and it must not allow any third parties to use them. (c) Genetic Disorders UK may revoke the Recipient s permission to use the Genetic Disorders UK and Jeans for Genes Day names and logos immediately by notifying the Recipient in writing if the Recipient is in material breach of any of these Terms and Conditions. If Genetic Disorders UK does so, the Recipient must immediately stop all use of the Genetic Disorders UK and Jeans for Genes Day names and logos. 4. MONITORING AND EVALUATION 5. DURATION OF THIS GRANT AGREEMENT (a) These Terms and Conditions will (unless the context or express provisions otherwise indicate) prevail and remain in force as follows: (i) (ii) For the period of one year following payment of the last instalment of Grant funds; For the period that any Grant funds remain unspent; (iii) For the period that any of the terms and conditions of these Standard Terms and Conditions remains unperformed or any breach of the same continues. (b) Genetic Disorders UK may continue to use the personal data relating to the Primary Contact Person and any volunteers who assist with Jeans for Genes Day in accordance with the Grant Collaboration Framework set out in the application pack, to contact and inform such individuals about future appeals. The Recipient will ensure that it has any authorisation required to allow Genetic Disorders UK to use the data in this way. 6. INTERPRETATION These Standard Terms and Conditions and any dispute or claim arising out of or in connection with them or their subject matter or formation (including non-contractual disputes or claims), shall be governed by, and construed in accordance with, English law, and the parties irrevocably submit to the exclusive jurisdiction of the courts of England and Wales. (a) The Recipient must keep proper and up-to-date accounts and records, including invoices, which show how the Grant has been used. These financial records must be copied to Genetic Disorders UK on request and be available to Genetic Disorders UK or its representative for inspection and copying. (b) The Recipient must inform Genetic Disorders UK of any adverse changes in its financial or reputational affairs which could affect its obligations towards Genetic Disorders UK or Jeans for Genes Day. (c) The Recipient must take steps to monitor the success of the Project and complete an End of Grant Report that will be available on the Jeans for Genes / Genetic Disorders UK Grant Programme website www.geneticdisordersuk.org/grantprogramme (d) The Recipient will provide a copy of its annual accounts within 10 months after the end of the financial year in which Grant payments are made. The Recipient must meet any relevant statutory requirements as regards accounts, audit or examination of accounts, annual reports and annual returns. 11
Appendix B Guidance for support groups and charities when presenting their applications to the grant panel Genetic Disorders UK will invite shortlisted organisations requesting 5,000 or more to present their project to an independent panel of around 10 members from the media, business and genetic disorder communities. To ensure the panel has a complete understanding of your support group / charity s application within the time allowed, we would ask that you note the following guidelines: Limit the number of people who present to the panel. It can detract rather than add to the impact of your presentation if too many people are presenting or trying to answer questions. The panel recommends that one or two people (in the case where there are two different areas of expertise) works well. All presentation materials must be received by Genetic Disorders UK by Wednesday 12th November 2014. Please send a PC-compatible electronic version of your presentation to Genetic Disorders UK. The panel will not allow any CDs, DVDs or memory sticks to be introduced on the day. Please assume that all panel members have read your application form. Do not spend too much time in your presentation repeating information in the materials. Do use the presentation as an opportunity to bring your support group / charity, your members and your proposed project to life. Each shortlisted applicant will have 15 minutes to present and answer questions. PLEASE NOTE THAT ALL PRESENTATIONTS ARE LIMITED TO 10 SLIDES. The panel suggests that you spend no more than half your allocated time on your presentation and structure your presentation as follows: three minutes on the genetic disorders(s) that you work with and the impact of your activities on those affected In summary, the panel strongly advises that the support groups / charities invited to present use the opportunity to demonstrate the enthusiasm and professionalism of those involved in the charity, and the merit of the project for which the charity is seeking a grant. NB. Please note that the dates of the panel are fixed. In the event that a representative from an organisation is unable to make it to the panel presentations due to unforeseen circumstances, the panel will consider the application form alone. three minutes on the project that you are proposing for a grant The remaining time can be used for questions from the panel. NB. In order to keep to a tight schedule we will have to stop your presentation after 10 minutes so that the panel can ask you questions about the project. To keep to time, we would prefer no films or PowerPoint transition effects are included. 12
We hope that this Guidance for Applicants ensures that the application process for the 2015 Jeans for Genes Day / Genetic Disorders UK Grant Programme is straightforward and transparent. We welcome any suggestions that you may have regarding the current grant programme and application process. Genetic Disorders UK 199A Victoria Street London SW1E 5NE T 020 7199 3300 grants@geneticdisordersuk.org Genetic Disorders UK is a charitable company limited by guarantee registered in England and Wales (registered charity number 1141583 and registered company number 7564771). The registered office is 199A Victoria Street, London SW1E 5NE. JEANS FOR GENES DAY Supporting families affected by genetic disorders