Take action on key federal or state issues affecting people with bleeding and clotting disorders; look up and contact your elected representatives and tell them about what’s important to and your family.
Your personal story and the stories of others in this community are the most powerful advocacy tools at our disposal! Share your stories to help us tell legislators, the media and others about the everyday struggles people with bleeding and clotting disorders face in accessing high-quality healthcare and adequate reimbursement.
Get information on state advocacy initiatives and relevant stories on legislation, health care, insurance and more.
The Cascade Foundation of Southern Arizona, Inc. is committed to advocating for the needs and interests of the bleeding disorder community. We will work with the community to educate elected officials and other government agencies about the distinct needs of patients and their families. Our goal is to solicit government funds to improve specialized medical care, education and awareness, product safety and patient freedom of product choice.
We also work closely with the Arizona Hemophilia Association and the National Hemophilia Foundation to address community needs at the federal and state levels. By uniting and leveraging our collective resources we hope to make significant strides in impacting policies that affect the interests of people with bleeding and clotting disorders.
You can help us make a difference. By learning about critical issues facing people with bleeding and clotting disorders you can help us to raise public awareness and promote the best policies.
Patient/family social support needs, including group meetings, facilitators for support group and parenting education class, prizes/certificates for academic achievement and exceptional school attendance. First Steps Program Development for families with children 0-7 years. Development of programs to support adolescents and young adults with bleeding disorders (Social support, drug and alcohol prevention and intervention, teen pregnancy education and prevention, gang related violence prevention, youth leadership programs). Hispanic women’s support group provides a culturally sensitive venue for Hispanic women with bleeding disorders or with family members who have a bleeding disorder to discuss issues and get education.
The Cascade Foundation, in conjunction with the Arizona Hemophilia Association, is dedicated to providing assistance to the bleeding disorder community in Southern Arizona. We are focused on seeking out new funding sources to support the development and implementation of programs and services by the Arizona Hemophilia and Thrombosis Center in Tucson. Below is a summary list of programs and services that you can help us support through your generous contributions.
Expansion of a multi-media hemophilia educational program for patients, families and health care providers. Educational materials such as anatomical models and charts for the purpose of patient education specific to hemophilia care and teaching infusion of factor products. Development of printed, age-appropriate educational materials that correspond to 'Transitional Guidelines for Hemophilia.' Transitional guidelines were developed nationally to ensure that children with bleeding disorders develop physical and social skills in a continuous and progressive fashion throughout childhood, adolescence and into adulthood. Spanish translation of all materials to provide bilingual hemophilia education for our Hispanic population.
Genetic Testing of siblings and family members is often not covered by personal health insurance. It is helpful to provide both diagnostic information as well as genetic counseling to potential carriers. Genetic testing and counseling services will be offered to those family members deemed at risk and when needed for evaluation of a bleeding disorder.
Dental treatment for those patients without dental insurance or without income to cover dental co-pays and unable to afford dental care. Providing dental care will eliminate tooth loss, periodontal disease and emergency oral bleeding. Services would include cleaning, x-rays, restorations, endodontic and periodontic care. Cosmetic procedures are not included.
To provide support and education to women with bleeding disorders that is lacking in general hemophilia education. The hope is to expand it to two tracks including carriers of hemophilia and women affected by von Willebrand Disease.
Annual event to enhance communication and participation of fathers and sons incorporated into a social event. Exercise is encouraged in patients with Hemophilia. This event will encourage joint participation of fathers and sons in an active lifestyle. Obesity is an epidemic in America and significantly impacts dosing of Factor for individuals with hemophilia.
Funding for urgent lab work not covered by insurance (ie. Diagnostic studies for inherited bleeding/clotting disorders). Funding for lab and radiology studies relevant to approved research in inherited bleeding/clotting disorders.
Any research study initiated at the HTC level requires extensive documentation and initial start up costs. This category of funding would allow for the support and funding of initial steps in the research process for those doing research related to inherited clotting/bleeding disorders. In addition we are currently working with the University of Arizona College of Medicine to create a research fellowship program that will provide the necessary resources and expertise to further advance genetic research in the area of hemophilia and its related complications.
For physicians, nurses, nurse practitioners, social workers, counselors, child life therapists, and physical therapists involved in direct care of people with inherited bleeding or clotting disorders for meetings and conferences related to inherited bleeding/clotting disorders and/or general health care.
Items that are essential for the prevention of bleeding complications that cannot be provided to patients through other sources, which may include bicycle helmets, knee pads/supports, orthotics, Medic Alert bracelets, cold/pressure cuffs (Cryocuffs) to be used to control bleeding.
Have you contacted your Arizona State Legislator recently?
You can use the web links below to find out who your representative is. Be sure to contact them today and let them know your story and
how their decisions at the Capitol will affect you and your family.
Soft-sided helmets by Comfy Caps
Learn about NHF’s current national and state legislative and other advocacy priorities.
Find information on healthcare coverage in your state; explore tools and other information to help you effectively communicate our issues to legislators, government officials, payers, media and others; find links to other organizations that can help, and more.
Register for the NHF annual legislative action conference and visit to Capitol Hill; learn about the issues with fact sheets, talking points and other important information.
Hemophilia Uniting Generations (H.U.G.) is a Family Camp for patients and their families affected by inherited bleeding disorders. The mission is to provide family centered activities and education in an outdoor environment. It is a creative way to promote a healthy active lifestyle for families. Physical activity promotes healthy joints and muscles and decreases risk of bleeding episodes. The camp is staffed by camp personnel as well as professionals in hemophilia care and child development. Our hope is to expand this camp to all of Arizona and to incorporate hemophilia education directed at the family unit.
Educational scholarship for affected patients for secondary education expenses. $2,000 per academic year.
New program being developed to assist youth in academic tutoring. Please contact us for more information. firstname.lastname@example.org