Huntington’s Disease Youth Organization

Strategic Plan 2013-2015

Planning Task Force

B.J. Viau
Task Force Chair
HDYO Chairman of the Board
Minneapolis, U.S.A

Catherine Martin
HDYO Vice Chair
Glasgow, Scotland

Brynne Stainsby
Secretary, HDYO Board
Toronto, Canada

Matt Ellison
Founder and Project Coordinator Coventry, England

Key Terms

• HD = Huntington’s Disease
• HDA = Huntington’s Disease Associations
• HDYO = Huntington’s Disease Youth Organization
• YP = Young People
• HCPs = Health Care Professionals

Introduction

The Huntington’s Disease Youth Organization (HDYO) is a youth-led organization that launched in February 2012 with the aim of improving access to support and education for young people impacted by HD around the world. HDYO was created by a dedicated group of young people and quickly gained the support of Huntington’s Disease Associations around the world. Young people in many regions of the world currently receive very little support. HDYO provides a place for all young people to receive appropriate and engaging educational information and support.

Since launch, HDYO has been a success by providing valuable tools to empower young people through knowledge and understanding, and making a difference for many youth searching for answers and support.

HDYO’s website (www.hdyo.org) is split into 6 sections (kids, teens, young adults, parents, professionals and JHD) and contains a vast amount of educational information about HD created specifically for young people, which makes learning about HD interesting, understandable and relevant for young people. The success of the HDYO website is staggering with over 250,000 site views in 2012. The website provides more than education; support is also available for young people and can be accessed by contacting HDYO through various avenues or going on the HDYO forum and talking to other young people impacted by HD from around the world. HDYO has been highly praised for what it offers young people, from families, parents, professionals and young people themselves.

The HDYO Board decided that a mini strategic plan needed to be created to provide key goals to focus on over the coming years. A small group from the board came together and created this plan with consulting efforts from multiple parties. This plan will help HDYO remain focused on its core missions and provide the best we can for young people impacted by HD globally. Purpose HDYO is a youth-led organization that focuses its efforts on providing and improving support for children, teens, young adults impacted by HD around the world. HDYO provides educational resources and support opportunities for young people impacted by HD globally. We provide educational resources both online through our website and offline through brochures and fliers. HDYO content is also made available in as many languages as our translators make possible. It is HDYO’s ambition to reach every young person impacted by HD so that they have a good standard of support available to them no matter their circumstances.

HDYO seeks collaboration on an international scale with young people and HDAs around the world. By working together, we can improve support for YP at a more progressive and productive rate.

Our Community

The primary focus of HDYO is supporting young people (Young adults, teenagers and children) impacted by HD in some manner around the world.

Parents, families and Health Care Professionals (HCPs) are also an important secondary community for HDYO. We provide support to parents to help them talk to and support their children. Parent’s approval for HDYO is vital in order to reach YP. HCPs are important in helping spread the word to families about HDYO. If we can reach HCPs at conferences or other opportunities, we hope that they will refer families and YP to HDYO since support for young people may not be their specialty or interest.

Plan in summary

In the upcoming pages, the Strategic Plan is presented as a grid that clearly states the overarching goals and plans for attainment of these goals throughout the next three years. The Plan is organized around the three goals, which are the key drivers of organizational growth. They are the fundamental business ambitions and represent the essential areas of our work.

For each goal, strategies are then identified to reach the stated aim and specific objectives for each strategy articulate the plans for accomplishment. Next, the initiatives for each set of strategies and objectives are delineated. Finally, specific milestones for each of the three years of the plan are listed. These milestones are guideposts for progress. We expect that some projects will be completed early, while others may move later based on business conditions. There is a certain degree of flexibility built into the plan. Fundamentally, however, these milestones map the progress which we plan to achieve and the resulting impact that helps us reach our Goals.

Goals

• I. Continually produce educational and supportive materials and opportunities for YP and their supporters.
• II. Increase awareness about HDYO to the International HD Community.
• III. Establish HDYO as a sustainable organization moving into the future.
• IV. Collaborate with other organizations and HD Associations globally to provide the best support possible for young people impacted by HD worldwide.

Goal I: Continually produce educational and supportive materials and opportunities for YP and their supporters.

As a youth organization that focuses on providing high-quality educational resources we need to create and continue to create beneficial educational materials for YP to use throughout the world. Materials and opportunities will come through two different avenues: 1. Online 2. In person.
The online space has become a hub for young people to find resources and we are keen to build upon this. Online materials will all be funneled through our website www.HDYO.org

By having our resources online it makes it easier for people from around the world to access information at any time or place they wish.

Translations

New information is incredibly important, but one of the most important parts of HDYO is getting this information translated into new languages. HDYO launched all of its materials in English and since then German and Spanish have become available. We currently have numerous other languages that are being worked on by a team of 60+ translators. The continued progress with translations is key to reaching more young people and providing them educational resources.

Online

Online materials will continue to be through educational sections, videos, downloadable brochures and message boards. Additionally YP will continue to have the opportunity to ask questions through an HDYO email and get answers by the appropriate HCP. HDYO will continue to utilize social media as much as possible by using Facebook, Twitter, YouTube and other potential sites, but these spaces all direct our followers back to the HDYO website.

Videos

Videos will be a key initiative moving forward as they are powerful tools that are very effective and engaging for YP. There are many YP that are interested and willing to talk about their experiences and we have found this to be a very valuable tool to making HD a subject that can be talked about. As of December 2012, HDYO has 37 videos on the website and YouTube that have received a combined 10,000+ views. There are many topics to explore through videos and this will be a key for HDYO’s educational resources in coming years.

Research

HDYO is very interested in conducting observational research studies with the participation of YP and their parents. This research intends to help the global HD community learn more about the needs of YP and how we can help better support them in HD families. HDYO will first begin doing research in 2013 by using the online survey tool, Survey Monkey. We will encourage participants to take part in this research through our website and social media platforms.

Communication

HDYO intends to create more tools to communicate with the youth community and provide more resources via communication. Newsletters, articles and podcasts are all tools we aim to create over the coming years in order to offer more for young people and expand on how much information we can provide young people.

In Person

Materials

In 2012 HDYO created materials such as flyers and brochures which promote HDYO as a service to young people, families and professionals globally. These materials are translated into various languages in order to reach more people. However, we do also intend to create an educational booklet which will be produced on a needs basis globally. Meaning HDYO educational booklet may not be distributed in one region due to the need for such a booklet being low as access to the HDYO website is high, whereas another region may not have good access to the website and therefore the need for an educational booklet is greater. The booklet will be translated like all HDYO materials are.

Education Seminars

Some HDAs currently have workshops, youth days and youth camps which provide opportunities for YP to learn and connect with others. YP have found these opportunities to be incredibly useful and have voiced a need for more. Unfortunately many of these opportunities are only held once a year in a single location so many YP are not able to attend every year. Moving forward HDYO is looking to partner with the local HDAs to bring these opportunities to more young people around the globe that are more frequent and easier to access. HDYO will seek to offer or support youth sessions at all HD events worldwide. This will be in an effort to encourage more sessions to take place initially and also to ensure high quality and appropriate agendas.

HDYO Youth Camps or events

HDYO will be co-organizing the European HD Youth Camp for 2013, and event which has been going for three years and will offer over 40 young people from Europe the opportunity to spend 5-7 days at a supportive camp environment with other young people impacted by HD. This camp will also feature educational activities and sessions about HD to encourage knowledge and discussion. HDYO will play a major role in the organization of the Euro camp for 2013 including being the body which applies for camp funding. We aim to try and bring similar initiatives to other regions of the world if we are able to acquire funding for such events. These initiatives may not be in the form of a camp, they may instead be a weekend conference for young adults, or a day session in a particular region. The goal is to provide face-to-face opportunities for young people that were previously not available.

Strategies

Goal I: Continually produce educational and supportive materials and opportunities for YP and their supporters.

Objectives

• Increase the number of education videos available.
• Continually Provide the highest quality educational resources for YP
• Offer support and education face-to-face.
• Offer new tools for YP to access more support and info.
• Provide educational booklets and resources for YP in regions lacking resources or access to HDYO’s website

2013

• Video Projects: Tour of the lab; Know your rights; What is HD? Educational; ‘HDYO: What we do’; Young Carers
• ­Create high-quality children’s resources
• History of HD website section
• Create more educational sections to cover bereavement & emotional wellbeing
• Improvements to HDYO website accessibility and forum
• Host educational sessions at HD events globally
• Co-organize the European HD Youth Camp 2013 and apply for funding for the camp
• Launch HDYO Podcasts
• HDYO Booklets
• Youth Day Pilot Program
• Website available in: Italian, Portuguese, Dutch, Norwegian and Polish.

2014

• Video Projects: Having Children experiences; YP impacted by HD in deprived regions of the world; Young couples (relationships)
• Provide more online educational resources
• Improvements to HDYO website, accessibility and forum
• Organize European HD Youth Camp 2014
• Look for funding for other youth events in different regions of the world
• Host educational sessions at HD events globally
• Support youth sessions run by HDAs
• HDYO Booklets in more languages
• Website available in: Swedish, French.

2015

• Video Projects: Living in a family impact by HD
• Create online educational games about HD for young people
• Improvements to HDYO website accessibility and forum
• Organize European HD Youth Camp 2015
• Host & expand educational sessions at HD events globally
• Support youth sessions run by HDAs
• Look to host more youth events if funding is available
• HDYO Booklets in increased languages
• Website available in: Danish, Czech, Hebrew, Japanese.

Goal II: Increase awareness about HDYO to the International HD Community

In order for HDYO to be utilized to the max, we need to create plans for awareness and dissemination of the resources. In 2012, HDYO has established the knowledge and tools on how to properly distribute our education around the world. Our PR initiatives support our two platforms of online and in person reach. Although we have had a lot of success in 2012, we understand there are plenty of regions and people that we are still working to reach.

Online

Facebook, Twitter and YouTube are our main online platforms. As of December 2012 we have 4,000+ Facebook page ‘likes. Facebook has been one of our most successful platforms allowing people to connect with HDYO and other members. We use our Facebook Page as a way to communicate new and up to date news going on throughout the HD Community. Twitter has been a nice outlet for HDYO to reach a different audience. There are currently only 200 Twitter followers, but this number is rising and we hope to help this number continue to grow. YouTube is the most popular online video site and HDYO videos have been viewed 10,000+ times.

Facebook

To add on to our viral reach from 2012, we will continue to look for new ways to find young people on Facebook. Often Facebook has opportunities to have free or inexpensive ads and these opportunities will be utilized throughout the year. Our goal is to have 7,500 followers by the end of 2013 and 10,000 by the end of 2015. By having this large following, our page we will be able to offer materials to a wider audience on a more frequent basis.

Email Database

HDYO will be looking into setting up an account through Mail Chimp to help create and organize an email database. We will use this database to disperse information to YP around the world. By using a service like Mail Chimp we will also be able to organize and specify who and where these emails are going. For example if we want to send an email specifically to YP in the United States, we will be able to use the tool to make this happen. Our goal is to have 1,000 people in our data base by the end of 2013 and 2,000 by the end of 2015. We plan to email each individual no more than four times per fiscal year.

In Person

Conferences and Conventions

Online is a great place to reach YP, but the impact made in person is often more significant. The opportunity to see HDYO being advertised in person brings HDYO to life and helps YP realize that this is real and something they can utilize. Over the past two years the HDYO board and volunteers have had opportunities to travel the world to different conferences to connect and meet with people affected by HD. These conferences gave us the opportunity to highlight HDYO. In 2012, there were over 10 conferences that were solely attended by young people who were non-HDYO Team members. We now have a global participation project in place to commence in 2013 and this will train local young people to represent HDYO in their region. Attending professional conferences has also been one of our main targets as the opportunity to make HCPs aware of HDYO will lead to more families finding out about our resources. We have found that HCPs are very interested and excited about helping YP. HCPs are continually getting asked by YP for information and the HCPs have found HDYO an ideal place for to direct the YP for answers.

Clinics

We know that almost all of people dealing with HD go to a physician to seek treatment and guidance. HDYO has been asked by clinics to create posters to hang and brochures to be available in the waiting rooms at larger institutions. Even though YP don’t usually attend the physician visits, we believe that the awareness given to parents will help them encourage their children to look at our resources.

Advertising/Merchandise

HDYO has found a very inexpensive way to create and distribute materials around the world to help create awareness and enthusiasm with YP. A T-Shirt and wristband are the two pieces of merchandise that were created. At conferences we sell the T-Shirts for ‘cost’ and give away the bands for free. The response to these pieces has been tremendous as YP from around the world have been taking pictures in their HDYO gear and posting them to our Facebook page. By having merchandise specifically for YP, they feel proud to wear the shirt which helps spread awareness around the world about HD. The pictures sent in help show others that it is ‘OK’ to walk around in public with an HD T-Shirt and are incredibly empowering for YP. Moving forward we will look to continue to create useful and needed pieces of merchandise to continue the positive reach around the world.

Strategies

Increase awareness about HDYO’s resources to the International HD Community

Objectives

• Reach YP through multiple different platforms
• Find ways to connect with new YP
• Representation at HD Conference worldwide
• Distribute and sell HDYO Merchandise
• Advertise at HD Clinics and Support Groups

2013

• Facebook ad creation and continued news dissemination.
• Increase twitter interaction.
• Attend 1 HD Conferences; World Congress, AAN, MDS, HSG, HDSA, EHDN
• Create posters for HD Clinics to hand out in waiting rooms

2014

• Create new T-Shirt and wristbands
• Attend non-HD conferences focused on supporting youth globally to increase contacts and knowledge
• Continue to provide HDYO presentations at even more events globally

2015

• Continue to attend conferences worldwide and represent HDYO positively
• Promote HDYO in new regions currently not reaching

Goal III: Establish HDYO as a sustainable organization moving into the future.

The future of HDYO relies on the ability to create a sustainable organization with a structure for success. HDYO is a youth-led organization and as demand increases on our service we are keen to expand our organization to bring in more YP and create more roles and services.
By allowing more people to get involved by taking on roles and responsibilities we predict that HDYO will become even more successful. New regions around the world will be able to participate in HDYO and provide more for young people impacted by HD globally.
By providing the structure needed for a strong future, HDYO hopes to continue to develop effectively as a youth-led organization and cope with increased demand on the service.

HDYO Board of Directors

At the beginning of 2013, HDYO will officially welcome a Board of Directors to the organization. The board will consist of 10+ individuals from around the world that represent different parts of our mission. The individuals will represent: Young People, Parents, Professionals and HDAs. This board will oversee the new volunteer activities and potential paid staff. Some board members will also be involved with day to day activities to help the organization run. Board members were recruited as they showed a great desire to be involved with both supporting young people and HDYO. Terms and conditions for the board can be seen upon request.

HDYO Staff and Volunteers

In order to continue to create useful and professional materials at the amount requested, we are looking to find funding to support one individual to oversee project creation. The funding will provide a nominal salary to the individual. Additionally we have created new roles for volunteers to undertake. Specific volunteer roles consisting of, but not limited to are; Translation Coordinator, Forum Moderators, Communications team and Podcast team.

HDYO International Representatives

The International Representatives is a new initiative to give HDYO local representation in HD Communities around the world. Representatives will be volunteers with a mission to spread the word about HDYO throughout their community or region. Typical opportunities will consist of attending conferences, speaking at support groups and communicating with local HD clinics. There will be specific training that each individual will need to undergo in order to become a representative of HDYO. This training has been created by the HDYO team and will ensure representatives are well-trained and supported to undertake their role. Two underlying goals of this project are to allow more young people to participate in the HD community at their own pace and comfort. This in turn will lead to more young people becoming involved with HDYO at a higher level in future years. The initial handful of representatives will be individually selected as a pilot program and then in 2014-2015 we will open the opportunity up to a broader audience of YP.

Strategies

Goal III: Establish HDYO as a sustainable organization moving into the future

Objectives

• Create more volunteer opportunities for YP.
• Ensure HDYO is always sustainable
• Find funding to support full/part time staff member(s)

2013

• Launch new HDYO Board of Directors
• Launch new volunteer roles and responsibilities.
• International Rep Training (Pilot Program)
• Seek funding to support one paid staff role.

2014

• International Rep Program expansion, more training for more regions.
• Promote more young people to the HDYO board and staff roles

2015

• Seek funding for potential new staff opportunities
• Promote more young people to the HDYO board and staff roles
• Create new volunteer roles to expand our service

Goal IV: Collaborate with other organizations and HD Associations globally to provide the best support possible for young people impacted by HD worldwide

In order to provide the best support for young people HDYO must use a collaborative approach and work with other organizations/associations globally to continually provide the best opportunities for young people impacted by HD. HDYO has recognized this need for collaboration since we launched and has already begun to make strong connections with HDAs around the world. In 2012, HDYO received official support and funding from 11 HDAs which signifies the collaboration element of our organization.

Youth service development collaboration

An important aspect of our collaboration is to work with HDAs and groups globally to develop or improve the youth service they offer for young people impacted by HD in their region. Towards the end of 2012 we became an official partner of the HDAs in Ireland and Northern Ireland project to create a cross-border youth service to work in both regions. This youth service is youth-led with a committee of young people providing the direction for the service and funds for a youth worker being applied for by the HDAs. HDYO’s role is to support the development of the service by providing advice to the HDAs involved and supporting the young people on the committee to perform their roles. This is something we are keen to do in other regions of the world with other HDAs.

Support events for HDA youth services/groups

HDYO strives to work with youth services and groups already set up to support young people in specific regions of the world. Here HDYO will collaborate to provide the best support and opportunities for young people in those regions. In 2012 HDYO made numerous presentations at events put on by youth groups/services in regions all over the world, which is a very positive start and something we hope to build upon in the future and work even closer with these groups and services. In 2013 we intend to film some of HDYO’s video projects at youth events globally to involve these groups and provide greater participation opportunities.

Work with HDAs and other organizations to provide specific support to young people

HDYO’s reach is limited to how far our funds go. But by collaborating with organizations both globally and locally we can provide more support and opportunities for young people impacted by HD and provide more than our service alone can offer. Young people in different societies face different barriers to support and have different ideas/needs about support. HDYO must be aware of this and look to work with organizations to provide the support young people impacted by HD need in that region.

Strategies

Goal IV: Collaborate with other organizations and HD Associations globally to provide the best support possible for young people impacted by HD worldwide

Objectives

• Youth service development collaboration
• HDYO work to support events for HDA youth services/groups
• Work with global or local organizations to provide specific support to young people impacted by HD in those regions

2013

• Help develop the Ireland/N.Ireland youth service.
• Provide project participation opportunities with young people in youth groups/services globally
• Increase collaboration with HDAs and other youth groups/services
• Attend conferences to make contacts with organizations both globally and locally that could further our reach

2014

• Look to collaborate on the development of more youth services regionally
• Provide project participation opportunities with young people in youth groups/services globally
• Increase collaboration with HDAs and other youth groups/services
• Work with other organizations to increase the support we provide young people

2015

• Look to collaborate on the development of more youth services regionally
• Support development of youth services we have helped create
• Provide project participation opportunities with young people in youth groups/services globally
• Increase collaboration with HDAs and other youth groups/services
• Work with more organizations to increase the support we provide young people