Our MISSION is to assist and enhance the quality of life for Maine?s people and families who have a bleeding disorder.

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1 Our MISSION is to assist and enhance the quality of life for Maine?s people and families who have a bleeding disorder. Bleeding disorders are life threatening, debilitating, and expensive to treat. A child with Hemophilia will spend $300,000 annually to prevent bleeding. Some children and adults build up inhibitors to the treatment and costs can exceed $1,000,000 per year. Failure to preventively treat the disorder can result in prolonged and painful bleeds that cause permanent and severe damage. Access to affordable and adequate health care is critical to being a self-sufficient, contributing member of society. Living with or caring for someone with a bleeding disorder can be very challenging, but manageable with the right balance of education, treatments and therapies, and self-care, people affected by bleeding disorders are better able to cope and become self-advocates for themselves and their families. Families and individuals are often in search of answers to their questions; solutions to their challenges; and effective treatments for their needs in an attempt to find this balance. Founded in 2010, the Hemophilia Alliance of Maine (HAM) is often a vital resource in this search. As the only state-based bleeding disorders advocacy organization in Maine, HAM currently serves 150 people affected by a bleeding disorder. Our member population is spread across the entire state of Maine, and through our partnership with the Maine Hemophilia and Thrombosis Center, HAM's size continues to grow. We know the struggles that people who have a bleeding disorder face and we can help. Our vision is to continue to serve all bleeding disorders, supporting the growing diagnosis of women affected by bleeding disorders, continue to support the development of our local meeting programs, a strong advocacy program, a committed communication program, education and engagement for all ages - and continue to support a future where all stakehodlers are engaged in meaningful connections

2 OUR PROGRAMS ADVOCACY - EDUCATION - SUPPORT - ASSISTANCE ADVOCACY. Advocacy is at the heart of all our programs. We believe that when people understand their ability to affect change in their lives and the lives of others, we are all better off. We work at the personal, local, state, and national level to ensure those affected by a bleeding disorder do not go unnoticed. On the personal level, HAM serves its community by providing self-advocacy education, such as how to speak up for your care needs and how to navigate in school services at multiple local and statewide meetings. We regularly connect with our community's representatives at the statehouse and in Washington D.C. making sure that the bleeding disorders community is visible to those that make the laws that affect us. We also create and provide opportunities for our members to connect with their representatives both on-line and in person. We have a voice and we use it! SUPPORT. In Maine, the pine trees that grow the straightest and strongest are those that are in a forest, not the ones left alone in a field. We believe the same. HAM exists to bring people together One of our original slogans was, "Like a forest of trees, we support each other." We continue in this vein by creating regular local and state -wide opportunities for our community to connect. We have also provided opportunities and support for our community to connect with the regional and national communities. EDUCATION. Like advocacy, education plays a key role in all we do. Our goal is to ensure that ALL people affected by bleeding disorders know a great deal about their disorder and, from an early age, understand their symptoms. We want to educate all people to understand that adequate treatment is crucial and can improve quality of life. for people with bleeding disorders. We also work to educate people about how to deal with the psycho-social affects of having a bleeding disorder or caring for someone with a bleeding disorder. ASSISTANCE. Medical expenses are a challenge for most people. Add in the high costs associated with bleeding disorders (in most cases medication costs are above $300k each year), and you might begin to understand the financial pressure many if not most people in the bleeding disorders community deal with. With such high costs, in some families, it's sometimes difficult to make ends meet and we are here to help those in need get out of an emergency when they need it.

3 OUR EVENTS AND ACTIVITIES Inf usion Training. What is the Hemophilia Alliance of Maine?s (HAM) number one goal? To ensure that people know how to manage their care and stay healthy! Most of our affected members rely on life saving factor that must be administered intravenously. Through our partnership with the Maine Hemophilia and Thrombosis Center (HTC), we regularly provide trainings for patients and caregivers to learn how to self infuse and infuse at home. St ick and Swim. As part of our infusion training program this program creates the opportunity for our youth to not only work on self-infusion, it gives them the opportunity to engage in physical activity! Healthy bodies equals healthy joints! PIGLETs - Peopl e Int erest ed in Grassroot s, Local Engagement, Toget her! Especially in rural areas, it is important to provide programming that people can access. Reaching people where are they makes engagement feasible. Our PIGLET program provides education and support at a local level, creating opportunities for people to connect with those that are closest to them which in turn supports the growth of their care network. Women?s Out reach. HAM, in conjunction with the Maine HTC, works to bring attention to a very underserved community, Women With Bleeding Disorders (WWBD). Through our ongoing partnership, HAM and the HTC work to support the clinical education of Maine healthcare providers, create a patient-centered statewide conversation about Von Willebrand's?Disease and Women with Bleeding Disorders, and increase numbers of VWD and WWBD diagnosis in the State of Maine. Emergency Assist ance. Everyone gets in a tight spot and sometimes they don?t have anywhere to turn. As one can imagine, in our community, people are faced with many, many daily challenges and we know that among them can be financial difficulties. We are here to help and have been able to support people when the ends just do not meet. Worl d Hemophil ia Day. Annually, people around the world gather to remember the past and honor the future of our global bleeding disorder community. It was not long ago that tragedy struck the world, infecting and killing over 10,000 people, specifically in the US, with AIDS infected blood products. Thanks to the support of amazing volunteers and cross-sector relationships, HAM has been able to make this an annual tradition that allows us to recognize that we are part of a much larger community and we all depend on each other. Grandparent?s Gat herings. Many people of our community would not be able to manage their bleeding disorders without their generous and caring support of their extended caregiver network. HAM ensures that the greater caregiver network is identified and included in programming, educated, and connected. We especially highlight and service the grandparents who have spent many days and nights with our families in the doctor?s offices and emergency rooms as our families receive live saving treatments. We could not do any of this without them.

4 OUR EVENTS AND ACTIVITIES Advocacy Training. Not only do we train people to speak to their governmental representatives, we educate them about how to speak up for themselves and for their families. We encourage and educate people around how to use their voice, their skills, and the personal power to affect change in their lives and the lives of others so that we can all enjoy a healthier, quality driven life. This statewide program successfully provides education around empowerment and advocacy for our affected members and their larger caregiver network. Travel Schol arships. The bleeding disorders community is served by two national organizations that provide annual advocacy education opportunities. HAM has found exceptional value in connecting local people to these activities. From an organizational point of view, local and national connections keep our community better informed about advocacy issues at a national level which in turn supports programs at a state level. Wint ercamp. A collaborative program shared with the New England Hemophilia Association, Wintercamp brings together the best things about Maine -- our people and our place! Through a four day program, participants engage in intergenerational, outdoor activities that promise to increase health and build community! Rare Disease Day. Through a strategic partnership with Maine Rare and the National Organization for Rare Disease (NORD), HAM connects with local legislators at the state house, educating them about what affects our community individually and collectively ensuring that our community is visible and an active part of the processes that govern us. Famil y Dance. An annual favorite, the Family Dance pulls together the local communities in northern Maine to provide fun fund-raising and bleeding disorders education for the general public into one great event! HIKE4HAM. This annual event brings together our extended community to support HAM, take HAM?s message to the greater community and build financial support for HAM?s sustained success. Wint erf est. HAM?s premier annual event, Winterfest brings together people from all over state of Maine to connect, learn, and celebrate our community at a weekend-long event. The benefits provided by the extended time together with other community members is invaluable and greatly supports the psychosocial well being of all affected by a bleeding disorder. Spending time together really reinforces the fact that we are not alone!

5 OUR PARTNERS, OUR PEOPLE LOCAL - STATE - NATIONAL - REGIONAL Since 2010, the Hemophilia Alliance of Maine (HAM) has been, and continues to be, the educator, the friend and mentor, the safety net, and the advocate for individuals with hemophilia, and Von Wilebrand?s Disease, among other related bleeding disorders. But HAM cannot do it alone. HAM relies on a strong network of volunteers, staff, donors, and community supporters to fulfill its mission. Since our beginnings, we've worked to cultivate a community that embraces inclusiveness and directed outreach to the under-served as guiding principles. From there we work to with other communities and organizations that toward a common goal of ensuring that our bleeding disorders community has a voice and has representation. Locally, we've created groups to serve people where they are. Still growing, our PIGLET Program (People Interested in Grassroots Local Engagement Together) allows people to be connected with those closest to them. At the state level, we've connected with several partners and continue to work together to bring about positive change. We work with MaineRare and Maine Health Allies as part of our advocacy program, staying abreast of state policy issues and ensuring our community is represented. Notably, we have strategically partnered with the Maine Hemophilia and Thrombosis Center (HTC) to increase our outreach efforts to all affected by bleeding disorders, especially those affected by Von Willibrands Disease and Women affected by bleeding disorders. Regionally, we work cooperatively with our industry partners to provide eduction. We also work cooperatively with the New England Hemophilia Association (NEHA). Working with the thought that more is always better, the Hemophilia Alliance of Maine supports NEHA's mission in serving Maine, the most 'geographically challenged state' in New England! With that, we also have cooperative relationships with our national organizations. Through these relationships, we keep abreast of national policy and public health issues through these partnerships. We are very proud to say that we are a member organization of the Hemophilia Federation of America and a chapter of the National Hemophilia Foundation.

6 WHAT AREBLEEDINGDISORDERS? HEMOPHILIA A person born with hemophilia or von Willebrand disease will have it for life. Bleeding disorders result from the inability of the blood to clot due to a defect in, or an insufficiency of, one or more key clotting proteins. Hemophilia A is the most common type of hemophilia. It is also known as factor VIII deficiency or classic hemophilia. Approximately one in 5,000 males born in the United States has hemophilia A. Hemophilia B is the second most common type of hemophilia. It can also be known as factor IX deficiency, or Christmas disease. It was originally named?christmas disease? for the first person diagnosed with the disorder back in Hemophilia B is far less common than Hemophilia A. Occurring in about one in 25,000 male births, hemophilia B affects about 3,300 individuals in the United States. Hemophilia is largely an inherited disorder, however, in about 30% of cases, there is no family history of the disorder and the condition is the result of a spontaneous gene mutation. While the majority of those diagnosed with hemophilia are male, it can occur in females although this extremely rare. All races and economic groups are affected equally. There are several other factor deficiencies that cause abnormal bleeding. These include deficiencies in factors I, II, V, VII, X, XI, XIII and von Willebrand factor. The most severe forms of these deficiencies are even rarer than hemophilia A and B. When a person with hemophilia is injured, he does not bleed harder or faster than a person without hemophilia, he bleeds longer. The result is the same for people with hemophilia A and B: they both bleed for a longer time than normal. VON WILLEBRANDS DISEASE von Willebrand disease (VWD) is the most common type of bleeding disorder. VWD is a bleeding disorder caused by a defect or deficiency of a blood clotting protein, called von Willebrand Factor. The disease is estimated to occur in 1% to 2% of the population. The disease was first described by Erik von Willebrand, a Finnish physician who reported a new type of bleeding disorder among island people in Sweden and Finland. von Willebrand Factor is a protein critical to the initial stages of blood clotting. This glue-like protein, produced by the cells that line the blood vessel walls, interacts with blood cells called platelets to form a plug which prevents the blood from flowing at the site of injury. People with VWD are unable to make this plug because they do not have enough von Willebrand Factor or their factor is abnormal. Researchers have identified many variations of the disease, but most fall into the following classifications: - Type I: This is the most common and mildest form of von Willebrand disease. Levels of von Willebrand factor are lower than normal, and levels of factor VIII may also be reduced. - Type II: In these people, the von Willebrand factor itself has an abnormality. Depending on the abnormality, they may be classified as having Type IIa or Type IIb. In Type IIa, the level of von Willebrand factor is reduced, as is the ability of platelets to clump together. In Type IIb, although the factor itself is defective, the ability of platelets to clump together is actually increased. - Type III: This is severe von Willebrand disease. These people may have a total absence of von Willebrand factor, and factor VIII levels are often less than 10%. - Pseudo (or platelet-type) von Willebrand disease: This disorder resembles Type IIb von Willebrand disease, but the defects appear to be in the platelets, rather than the von Willebrand factor. VWD is a genetic disease that can be inherited from either parent. It affects males and females equally. A man or woman with VWD has a 50% chance of passing the gene on to his or her child. There are no racial or ethnic associations with the disorder. A family history of a bleeding disorder is the primary risk factor.

7 HOW YOU CAN HELP We have the expertise and experience to provide the bleeding disorders community with needed programs and services, but we are continually in need of financial support to make this happen. Without that support, individuals with bleeding disorders may not get the treatment and support they need which can lead to greater risk of complications and permanent, debilitating injury. HAM's true strength lies in our desire to be in touch with the current issues that face our community, as well as making good use of the resources that we receive. It's through our on-the-ground work that we understand our community's needs, we stay on top of how state and national political decisions affect our community, and we diligently engage with the local and national community to make sure that our rural bleeding disorders community has a strong voice. Every bit of support we receive goes directly back into supporting the bleeding disorders community - we truly are a not-for-profit organization and it is our ultimate dream that the service HAM provides our local community ripples out to help others in need. To be able to reach as many affected people as possible, we recognize that there is an interconnected web of support that begins within each person that HAM touches. Please join us in helping make a difference in their lives of people affected by bleeding disorders so that they can lead a long, productive, and healthy life. DONATE TODAY.