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A library of past information.

Ladies Only: RMHBDA’s “Women’s Escape”

Friday–Sunday
November 8–10, 2013
Chico Hot Springs,
Pray, Montana

We need to organize! Please contact Brad if you are interested in attending and planning our program. Ladies, please leave the boys at home.
Our Women’s Escape committee includes: Jessica Amende, Christy Savage, Heidi Hart, Jane Robertson, and Sara Jestrab. Thank you for your time and support in planning this event. All of your expenses at Chico Hot Springs will be covered. If you need fuel assistance, please talk with Brad.
Please RSVP: Brad Benne, brad@rmhbda.org or (406) 586-4050

2nd Annual Walk for Hemophilia A Major Success!

October 9, 2013 — We couldn’t have asked for a nicer day on September 7, 2013. We had over 150 walkers at our Second Annual Walk for Hemophilia at Bogert Park in Bozeman, Montana. Good natured and generous supporters helped raise over $44,000 and awareness at our second ever walk. I want to send a very gracious thank you to our volunteers, team captains, and walkers for making our walk a tremendous success. We are so grateful for your participation.

We would also like to extend a very gracious thank you to our local and corporate sponsors: St. Vincent’s Healthcare, Barnard Construction, Baxter, Bayer, Biogen Idec, Bozeman Deaconess Health Services, CSL Behring, Fifth Street Design, First Interstate Bank, Grifols, HF Healthcare, Insty Prints, Fuller Family Medicine, Walmart, Novo Nordisk, Pfizer, CVS Caremark, and Restore RX.

Check our Facebook page for wonderful photos from our walk.

2nd Annual MT & WY Walk for Hemophilia!

September 7, 2013
Bogert Park, Bozeman
Registration 9 am; Walk 10 am

To be eligible for a special drawing prize, register as a Team Captain by July 15!

July 22, 2013 — Visit www.hemophilia.org/walk to create or join a walk team; click on the “MT” link, then click on your preference: “Register,” “Donate,” “Create a team,” or “Join a Team.” We’ve raised over $14,000 in corporate sponsorship as of June 27!

Can’t make it? We understand! But you can still participate and contribute by hosting a “mini walk,” BBQ, small party, or event in your community, or search out “virtual walkers” who can’t attend as well! Tell them they can, “sleep in, save gas, get a t-shirt,” and make a big difference for your family and families throughout Montana and Wyoming.

Also, call Brad Benne to find out how you can help! Your support is appreciated, this is your organization!

MT & WY Hemophilia Walk Kickoff!

You Are Invited to the Kickoff Celebration/Baxter Facts First Bleeding Disorders Education Seminars

July 22, 2013 — We will have food and quality education provided by Baxter. And of course, loads of helpful information on how to make your walk team make the last two weeks of fundraising really count! We can’t wait for you to join us.

Billings Aug 19 Bozeman Aug 20 Helena Aug 21 Missoula Aug 22
Please RSVP: Brad Benne, brad@rmhbda.org or 406.586.4050

Baxter Facts First Bleeding Disorders Education Seminar:
Managing Pain Understanding How To Assess & Manage Pain Effectively

The Facts First program is an interactive, educational series that covers a wide variety of topics affecting the hemophilia community. Facts First seminars bring together hemophilia experts, caregivers, and those living with hemophilia to address issues and questions in an open, conversational setting.

Mile High Colorado Camp

Save The Date! July 14–19, 2013

Leadership Pre-Camp Retreat July 12–14, 2013

Forms will be available in mid-March 2013! Stay Tuned!

The Hemophilia and Thrombosis Center (HTC) is proud to once again sponsor the summer camp program at Rocky Mountain Village.

Who Should Attend?

Children with hemophilia or other bleeding disorders Siblings of the above groups Mile High Colorado Camp is for ages 7–18. We accept 6-year-olds on a case by case basis. Programming is determined by age. Check back with us to learn about the different programs we offer at camp!

Why Attend Camp?

The purpose of camp is to learn about bleeding disorders, develop skills and have fun! Campers will have the opportunity to meet new friends and participate in a variety of traditional camp activities. As always, we have included educational components with the goal of encouraging self-confidence and independence. Many campers have learned to perform self-infusion, experienced teamwork, and discovered new skills during the week of camp. Staff at the Hemophilia & Thrombosis Center(HTC) and Rocky Mountain Village wants this to be a wonderful experience that creates a wealth of fond memories for your camper.

What Does It Cost?

Each family is required to pay a non-refundable $75.00 deposit. The remainder of the camp cost, approximately $1000.00 per camper, is underwritten by other sources. If you have questions or need additional information, please call Brad Benne at 406.600.2554. Scholarship forms are available. Scholarships will be granted on an individual basis.

Family Camp

Each summer, RMHBDA invites affected families living in Montana and Wyoming to attend a weekend retreat. The weekend is packed full of education, bonding, and fun!

Family Camp 2013

June 14–16, 2013
Luccock Park Camp
Livingston, Montana
For more information, visit www.luccock.org


For the 65 parents and teens, we will have teambuilding programming led by our guest, hemophilia leadership expert, Pat Torrey  and some time to relax with other families. This is a great opportunity to learn from and share experiences with one another.

We also have many great activities planned for our campers including arts & crafts projects, field games, and educational sessions for children with bleeding disorders and their siblings. Infusion classes will be offered from HTC RN, Sue Geraghty.

Call Brad with any questions at 406.586.4050

We need help organizing!

If you are interested in serving on the Education Weekend committee, please contact Brad at 406.600.2554.

This is your organization!

New! Donate to RMHBDA using PayPal

February 25, 2013 — In response to requests, we've established a PayPal account for those who wish to support our work with donations. It's secure and ready to use now! Just visit our Donate/Join page!

RMHBDA Education Weekend 2013 Recap

A special "Thank you" to our HTC for co-sponsoring our Education Weekend!

Thank you to our generous program funders:

Accredo Health Inc
Axiom Therapeutics
Bayer Healthcare
Baxter Healthcare
Biogen Idec Hemophilia
CSL Behring
CVS Caremark
Grifols
HF Healthcare
Kedrion USA Novo Nordisk
Octapharma
Pfizer Hemophilia
Walgreen Infusion Services

RMHBDA Education Weekend was held February 22–24 in Bozeman, Montana with 22 families attending — 32 youth and 40 adults. Educational sessions during Education Weekend included: infusion session, Von Willebrand disease, industry/product presentations, inhibitors, financial advice, how to be a good consumer, healthcare reform and overcoming challenges in dealing with bleeding disorders. All chapter members spent time visiting our exhibitors as they learned more about each company and their products.

RMHBDA welcomed three extraordinary additions to our Board of Directors: Sara Jestrab of Bozeman, Ben Kuss of Bozeman and Brian Schulz of Billings. We are truly grateful to Sara, Ben and Brian for volunteering their time to serve our community!

Everyone enjoyed the chapter trip to the bowling alley. Children enjoyed field trips to the Museum of the Rockies and Spire Climbing Center. Special thanks to Lisa Maxwell and Heidi Hart for assisting with the organization of the event!

From Our Executive Director — December 28, 2012

A Courageous Journey

By Brad Benne, Executive Director

Mark Twain once wrote, “Courage is resistance to fear, mastery of fear, not absence of fear.” That quote best describes our chapter and how we approached our first walk along with the many other obstacles we face relating to bleeding disorders here in Montana and Wyoming. Before I was involved in a leadership position with our chapter, our Board of Directors and previous Executive Director made a brave decision to participate in the NHF Walk program.

Although each chapter has unique challenges, our greatest challenge begins with location. We encompass all of Montana and Wyoming and many of our members travel great distances to receive adequate medical care and to attend chapter events. For many of us, our closest Hemophilia Treatment Center is in Aurora, Colorado. As you can imagine, due to the lack of access to quality care, families here quickly become a very close knit group with strong voices of support and advocacy for one another. Fortunately, our largest obstacle also brings us closer together.

As a chapter, we experienced some resistance and doubts as we moved forward with planning our walk. We knew very little about organizing a walk, and just like any new endeavor for any organization, big or small, the idea of pulling off such an event successfully, frightened us. Considerable effort had been put into planning previous fundraisers, but results never yielded sustaining results to support and maintain our chapter’s financial stability. At one point, our chapter even waivered and canceled our walk seven months before our event. But after our annual meeting, we rallied and restored plans for our first walk because we knew the future of our chapter depended on the walk.

Raising $50,000 and rallying a hundred walkers was a daunting and overwhelming goal for our organization. The support and guidance from NHF staff and other hemophilia chapters who willingly shared their ideas and experiences with us helped our chapter create a plan. With that said, our biggest challenge remained because we are by far one of the smallest and logistically challenged chapters to participate in the walk program. Although we followed the recommendations of the NHF staff, in some cases we had to adjust our game plan. For example, we combined our “Kickoff” and “Call to Action” meetings and included an educational session and free dinner.

We were thrilled to have over a hundred walkers and raise $27,500 as a chapter in our first walk! The walk also helped our chapter by making bleeding disorders more visible in our community. Hopefully, as the walk grows we will continue to spread awareness to every corner of Montana and Wyoming. We also raised nearly $10,000 in corporate donations, thanks to generous support from the pharmaceutical industry. We did step outside the box by raising $3,000 of sponsorship from local businesses not directly related to the bleeding disorder community. In addition, we were fortunate to have Sara Jestrab, a Montana State University student and NYLI participant, serve as a summer intern. Sara helped us spread the word of bleeding disorders and our walk in local newspapers, radio public service announcements, and Facebook. In addition to a stunningly beautiful fall day in Montana, with spectacular mountain scenery, we created a festive event by incorporated live music, face painting, super heroes, a duck race, and lunch for all walkers and volunteers!

Although we still have a lot of work to do as a chapter, and the year was full of numerous challenges, the rewards were much greater! Through media exposure, we were able to spread awareness of bleeding disorders in our communities. Even the majority of our volunteers and sponsors knew very little about bleeding disorders. The money we raised has created financial stability to expand our programming and replenish our financial assistance program. Our chapter members have always been highly involved with our programs, but the walk created a renewed sense of pride and enthusiasm among our chapter members and volunteers. The energy and hard work our chapter poured into making our first walk a huge success was a defining moment for our chapter - a moment as a member and the director that I am deeply proud to have played a role.

We are excited for our 2nd Annual Walk on September 7, 2013 in Bozeman, Montana. We believe our walk will continue to grow in spreading awareness and raising money to sustain and improve our chapter for years to come.

Sincerely, 
Brad Benne
Executive Director


151 Patient Groups Send Letter

to HHS Secretary on Essential Health Benefits Proposal

December 18, 2012 —
The Honorable Kathleen Sebelius
Secretary of Health and Human Services
The Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201

Re: Comments on Essential Health Benefits Proposed Rule

Dear Secretary Sebelius:

We, the undersigned, are health advocacy organizations representing millions of patients and their families who are committed to implementation of the Affordable Care Act (ACA). The manner in which the essential health benefits (EHB) are defined will directly impact how well health coverage works or does not work for approximately 23 million patients expected to be enrolled in the exchanges and the millions of enrollees in non-grandfathered individual and small group plans outside of the exchanges. We are writing to thank you for acknowledging our earlier concerns with the December 2011 EHB bulletin, and to comment on the proposed EHB rule issued on November 26, 2012. Specifically, we recognize the changes regarding prescription drug coverage, and now ask you to further consider our views as you finalize the rule in order to provide all patients with meaningful and affordable care and treatment.

Prescription Drug Coverage

We are pleased that you recognize the “one drug per class” minimum requirement was not workable for patients, particularly for those with serious complex chronic health conditions. The proposed language in the rule, “at least the greater of: 1) one drug in every category and class; or 2) the same number of drugs in each category and class as the EHB-benchmark plan” provides patients with greater access to medications. Unfortunately, it will inevitably fail to meet many patients’ needs and presents additional difficulties. Nevertheless, in the final rule, we urge you not to go below the proposed standard.

Meeting a Target Number of Drugs: Patients do not respond to a specific number of drugs but rather to specific drugs that best meet their needs as prescribed by their physician. The proposed rule merely requires plans to meet a target number of drugs within a specific class without regard to which drugs are covered. Under the standard described in the proposed rule, plans can choose not to include certain drugs that may have unique and important therapeutic advantages in terms of safety and efficacy, and still meet the requirements of EHB coverage just as long as they include a minimum number of drugs in the class. A system must be in place to review the adequacy and quality of each plan formulary; the quantity of medications must not be the only measure. EHB plans could exclude more effective therapies in some classes, which would violate the patient protections and non-discrimination policies in the law and would not be consistent with “typical” employer plans. A robust formulary is necessary because not all patients respond to medicines in the same way. Physicians may need to change medicines over the course of an illness, patients may become resistant to or suffer adverse side-effects from a particular drug, some may need more than one medication from the same class at the same time, and patients taking multiple medicines need alternatives to avoid harmful interactions. Patients need access to a full range of medicines. If they are not able to access appropriate medications, patients may become ill, impacting healthcare spending in the long run.

State Variation in Drug Coverage: According to analysis conducted by Avalere Health, there exists a wide variation in the total number of drugs included in the state selected benchmark plans. While some states have over 1,000 drugs on their formulary, others have fewer than half of that amount. Although simply judging the quality of a formulary by the number of drugs covered is a poor measure of its adequacy, it is troubling that we see such significant variation across states. This perpetuates the fragmented system of health care in the country. To meet patients’ needs, we suggest that plans be required to cover all or substantially all drugs in each class.

Plan for New Drugs: The proposed rule does not discuss how plans must address new drugs that come onto the market during the course of a plan year. The standard described in the proposed rule appears to tie the EHB formulary requirements for 2014 and 2015 to the number of drugs offered by the benchmark plan in 2012 and does not include any requirements for plans to cover drugs approved after 2012. We would suggest that plans be required to update their formularies using methods similar to Medicare Part D and the private insurance market. For example, Part D requires that independent Pharmacy and Therapeutic (P&T) Committees make decisions on coverage of new products within 180 days of their approval. As part of the requirement to review newly approved drugs, patients in EHB plans should be able to remain on older therapies without the fear that their prescriptions will be taken off the formulary when a newer drug is added.

Drug classification system: HHS proposes to use the US Pharmacopeia (USP) system to classify the drugs in EHB formularies, but this system would require changes to be used for this purpose. The USP only updates their drug classification system every three years, which will cause delays in reflecting new medical innovations. USP also does not recognize combination products, which have been shown to improve adherence and have become the standard of care in some areas. The USP system is also very broad, which would allow plans to cover the same number of drugs in a class as the benchmark while exclude groups of drugs needed for patients with certain diagnoses. If changes are not made to the USP, we recommend that HHS consider alternative approaches.
Appeals Process for Drugs not on Formulary: While the proposed rule states that a plan “must have procedures in place that allow an enrollee to request clinically appropriate drugs not covered by the health plan,” such a process is not laid out and we are concerned the interests of patients will not be adequately protected. The proposed rule merely states that a plan has to have a process, but does not provide any standards or requirements for an appeal process. We would recommend that the procedures outlined in Medicare Part D, which calls for an expedited, timelimited process with emergency filling of prescriptions be required. Further, we believe that HHS should adopt a standard of guaranteeing access to medically necessary pharmaceuticals through the appeals process.

Patient Cost-sharing: In the development of health plans, it is also imperative that patient costsharing be limited so that patients can afford access to lifesaving medications and other health care services. We are concerned with HHS’ proposal that patient’s out-of-pocket spending on out-of-network treatments and services would not be counted as part of a patient’s cost-sharing. We are also concerned that HHS proposed not to factor these costs into the calculation of actuarial value. This appears to be contrary to the language in the Affordable Care Act, which limits the “cost-sharing incurred under a health plan.” HHS should revise its position and specify that copayments and coinsurance on covered out-of-network services will count towards the out-of-pocket maximum. This change will be particularly important given the likelihood that health plans offering essential health benefits will use narrow provider networks. Utilization Management Techniques: It is critical that patients not be denied access to treatments through utilization management techniques such as step-therapy, prior authorizations, and quantity limits that impede quality care and treatment. Limits on these practices should be put in place along with a process for patients to appeal them. Physician Administered Medications: The proposed rule does not address the scope of prescription drugs available via the medical benefits offered as part of the EHB. The final rule should confirm that these medications will be covered through the medical benefit, as is the case in employer sponsored health plans.

Non-Discrimination Provisions

According to the law, "the Secretary shall ensure that the scope of the essential health benefits … not make coverage decisions . . . that discriminate against individuals because of their . . . disability" and will "take into account the health care needs of diverse segments of the population, including . . . persons with disabilities." The proposed rule merely restates what is in the law relative to non-discrimination and provides no further guidance to the states and plans on how these requirements will be administered or enforced at the plan, state, or federal level. Frequently, plans place drugs on specialty tiers or deny patients certain necessary treatments or services. Additionally, plan sponsors may devise or market a plan that discourages enrollment of certain patients, particularly those with chronic health needs.

The final rule must better define how the state and the federal government will assess, monitor and enforce the law’s non-discrimination measures. There needs to be rigorous methods for assuring that plan benefit designs and formularies do not result in discouraging enrollment by individuals with significant health needs. We do not feel it is sufficient to allow all monitoring to rest at the state level. The processes CMS uses in the Medicare Part D and Medicare Advantage programs has been successful and would be an appropriate model for CMS to use for EHB plans.

Access to Proper Care

The proposed rule does not address the need for patients to access quality health care nor does it set any standards of care for patients. Patients need access to a comprehensive range of health care services and providers to ensure quality care and positive health care outcomes. Many patients need access to specialist care, particularly those with chronic conditions. The final rule must allow for access to specialty care. There are tens of millions of Americans who are affected with serious chronic and/or rare diseases. For these patients, access to specialty physicians and other clinicians is essential for their diagnosis and treatment. Patients who do not have such access are at grave risk of having their condition reach crisis stages, increasing human suffering and requiring even more costly care, including hospitalization.

We thank you for your continued leadership in ensuring that more Americans will have access to health care. We realize that we are at a critical time in implementing ACA. Decisions that are made now will determine its success. On behalf of patients with many diverse chronic health conditions and disabilities, we look forward to a regulation that provides a more meaningful prescription drug benefit and a better explanation of the patient protections outlined in ACA.

Thank you very much.

Respectfully,

AGUILAS
Academy of Nutrition and Dietetics
AIDS Action Committee of Massachusetts
AIDS Foundation of Chicago
The AIDS Institute
AIDS Project Los Angeles
AIDS Resource Center of Ohio
AIDS Resource Center of Wisconsin
AIDS United
American Autoimmune Related Diseases Association
American Brain Coalition
American Dietetic Association
American Liver Foundation Allegheny Division
Arthritis Foundation
Asian & Pacific Islander American Health Forum
Asian Americans for Community
Involvement (AACI)
Association for Behavioral Healthcare - Massachusetts
Asthma and Allergy Foundation of America
California Association of Addiction
Recovery Resources (CAARR)
California Chronic Care Coalition
California Council of Churches
California Hepatitis C Task Force
California Senior Advocates League
Center for Independence of the Disabled, NY
Center for Public Policy Priorities
Chemung Valley Rural Health Network
Chula Vista Elementary School District
Clinical Social Work Association
Coalition for Pulmonary Fibrosis
Columbia County Department of Human Services
Community Access National Network
County Alcohol and Drug Program
Administrators Association of California
Crohn's & Colitis Foundation of America
Delaware HIV Consortium
The Delaware Valley Chapter of NHF
Dept. of Drugs and Alcohol, Addiction
Medicine Treatment, County of Santa Clara, CA
Diabetes Foundation of Mississippi
Down East AIDS Network
Easter Seals
Epilepsy Foundation
Epilepsy Foundation of Central & South Texas
Epilepsy Foundation of Greater Chicago
Faces & Voices of Recovery
Frannie Peabody Center
Gay Men's Health Crisis
Global Healthy Living Foundation (GHLF)
Graves' Disease and Thyroid FoundationHealth & Disability Advocates
HealthHIV
Healthy Start
Hemophilia Association of the Capital Area
Hemophilia Federation of America
Hemophilia Foundation of Maryland
Hemophilia of Georgia
Hemophilia of North Carolina
Huntington's Disease Society of America
Illinois Psychiatric Society
Immune Deficiency Foundation
Interfaith Worker Coalition
The International Autoimmune Arthritis Movement
International Myeloma Foundation
Intracranial Hypertension Research Foundation
Keville & Associates
Latino Commission on AIDS
Legal Action Center
Lifelong AIDS Alliance
Louisville Healthcare Navigators
Lupus Foundation of America
Lupus Foundation of Florida, Inc.
Lupus Foundation of Mid and Northern New York, Inc.
Lupus Foundation of Southern California
Lupus Research Institute, National Coalition
Massachusetts Health Council
Mary M. Gooley Hemophilia Center
Massachusetts Association for Mental Health
Massachusetts Association of Behavioral
Health Systems
Massachusetts Pharmacists Association
MassBio
Men's Health Network
Mental Health America
Mental Health America of Colorado
Mental Health America of Illinois
Mental Health America of Indiana
Mental Health America of San Diego
Mental Health Association of Michigan
Mental Health Association of New York State, Inc.
Mental Health Systems
Michigan Lupus Foundation
Minnesota AIDS Project
Minority Health Institute, Inc.
National Alliance of State & Territorial
AIDS Directors
National Alliance on Mental Illness
National Alliance on Mental Illness Alabama
National Alliance on Mental Illness California
National Alliance on Mental IllnessDelaware
National Alliance on Mental Illness Illinois
National Alliance on Mental Illness Iowa
National Alliance on Mental Illness Massachusetts
National Alliance on Mental Illness GreaterChicago
National Alliance on Mental Illness Ohio
National Alliance on Mental IllnessWashington
National Alliance on Mental Illness WillGrundy
National Alopecia Areata Foundation
National Asian Pacific American Families
Against Substance Abuse
National Association of County Behavioral
Health and Developmental Disability Directors
National Association of Hepatitis Task Forces
National Association of Hispanic Nurses (NAHN)
National Association of Social Workers, California
National Association of Social Workers, Washington State
National Council for Community Behavioral Healthcare
National Family Caregivers Association
National Fibromyalgia & Chronic Pain
National Minority Quality Forum
National Psoriasis Foundation
National Spasmodic Dysphonia Association
National Viral Hepatitis Roundtable
National Women ad AIDS Collective (NWAC)
New England Hemophilia Association
New York Association of Psychiatric
Rehabilitation Services
New York State Partners in Policymaking
New Yorkers for Accessible Health Coverage
Ohio AIDS Coalition
Parkinson's Action Network
Pharmacists Society of the State of New York
Prevent Cancer Foundation
Pulmonary Hypertension Association
Rehabilitation and Pain Management Associates, Baltimore, MD
RetireSafe
Rocky Mountain Hemophilia Association
RVL S.C.O.R.E. (RVL Spinal Cord Org for Regaining Excellence)
San Diego Center for Patient Safety, UCSD School of Medicine
Sjogren's Syndrome Foundation
Society for Women's Health Research
Sound Mental Health
State Associations of Addiction Services
State of Texas Kidney Foundation
The Sturge-Weber Foundation
Thresholds
Toledo Area Jobs with Justice
Tremor Action Network
UJA-Federation of New York
Urbana Human Services Organization
Veterans Health Council
Vietnam Veterans of America
Virginia Hemophilia Foundation
Washington Community Mental Health Council
Western Pennsylvania Chapter of the
National Hemophilia Foundation

2013 Education Weekend
& Annual Meeting

November 15, 2012 — Each year, the RMHBDA hosts an Education Weekend Conference. The purpose of the weekend includes bringing families and affected persons together to learn about cutting edge information on hemophilia and other bleeding disorders, as well as a time fors networking and peer support. Topics in the past have included updates on recent clinical trials and research, transitions, infusion, health care and insurance, advocacy skills, and information about the National Hemophilia Foundation.

2013 Education Weekend & Annual Meeting

February 22–24, 2013, Friday, Saturday & Sunday
Hilton Garden Inn, 2023 Commerce Way, Bozeman, MT 59715

Registration deadline is February 1, 2013

Read more , including tentative schedule!

Volunteers

If you are interested in volunteering to help plan next year’s Education Day, please contact Brad Benne at 406.586.4050.

Hemophilia Walk Raises over $41,000 — September 11, 2012

Dear Friends,

We couldn't have asked for a nicer day on September 8, 2012. We had over 125 walkers at our First Annual Walk for Hemophilia at Bogert Park in Bozeman, Montana. Good natured and generous supporters helped raise over $41,000 and awareness at our first ever walk. I want to send a very gracious thank you to our volunteers, team captains, and walkers for making our walk a tremendous success. We are so grateful for your participation.

We'll have a bunch of photos from a professional photographer soon, so check back here and on our Facebook page.

Sincerely, 
Brad Benne
Executive Director


National Hemophilia Foundation Annual Meeting

Start planning now for the National Hemophilia Foundation's 64th Annual Meeting, "Mapping Our Future," in Orlando, Florida, November 8–10, 2012.

Early Registration Discount

To receive a 20% discount on your registration fees, register online by 11:59 PM Eastern Time, Monday, July 9, 2012. Hotel information will be made available to you upon completion of your registration.

Florida is one of our most popular destinations, as many attendees extend their visits to vacation in Orlando.

During our yearly three-day gathering, you can be sure we will keep you busy, with educational sessions to attend, networking opportunities with others experiencing similar issues, and social events that help you unwind. The Activity Program for Kids & Teens will be taking a field trip to SeaWorld Orlando to enjoy thrilling rides, educational exhibits, animal shows and a chance to see everybody's favorite killer whale, Shamu. Universal Studios Orlando will open its gate for our Final Night Event. What could be more fun than a theme park at night?

A sneak preview of sessions includes:

  • "It's a Guy Thing, Too: Men with von Willebrand Disease"
  • " 'I Don't Need a Support Group — I have Facebook!' Risks and Rewards of Life Online"
  • "The Glass is Half Full: Reframing Emotional Challenges for Women"
  • "Head, Shoulders, Knees and Toes! Exploring the Pros and Cons of Protection Devices, such as MedicAlert, Pads and Helmets."

Once again, NHF will host a two-day Medical Track for Researchers and Physicians. One of the highlights of that meeting is a poster abstract presentation and reception. Separate tracks for nurses, physical therapists and social workers will provide sessions on inhibitors, sports participation and the role of social workers in genetics, respectively.

NHF Walk Program Celebrates 5th Birthday

Hemaware Magazine Notes Success of RMHBDA Chapter

by Beth Marshall | 10.22.2012  Originally Published October 2012

[Excerpted from complete article ]

It has been five years since the National Hemophilia Foundation (NHF) launched its Hemophilia Walk program, starting with five walks, held in New York City, Phoenix, Cleveland, Raleigh and Houston. During the first Walk season, about 2,700 walkers, and national and local sponsors raised more than $1 million in support of their chapters. It was a promising beginning.

Since then, the Walk program has been growing at an impressive rate. This year, chapters across the US will host 23 Walks. At press time, 8,000 people had registered to walk, and the chapters had raised $1.3 million.

. . .

Brad Benne, executive director of the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana, says his chapter has experienced challenges similar to the Lone Star Chapter. His chapter encompasses all of Montana and Wyoming; many members travel long distances for fundraising and educational events.

“We are small, but mighty,” Benne says. The chapter held its first Walk on September 8, 2012. At first, Benne was somewhat apprehensive about the small chapter’s ability to generate enough interest and volunteers to plan and participate in a Walk. Then he realized the potential benefits were too great to ignore. “Our board of directors saw it as another way for our chapter to sustain itself,” he says.

The Rocky Mountain chapter has held successful fundraisers before but nothing on the scale of the Walk. “Most of our fundraisers bring in about $2,000,” he says. “If our Walk raises $20,000, that will be a huge success for us.” The chapter, in fact, raised more than $25,000.

Walks bring more than money to the chapters. They can add members, too. “Walks are a great way for families to get more involved with our chapter,” Compton says. Families with newly diagnosed children can feel overwhelmed at educational events, but Walks allow them to participate, she says. In addition, kids with bleeding disorders meet each other and families bond. “New families have gotten to know us through our Walks and then will start coming to our other events,” says Compton.

Walks also help make bleeding disorders more visible in the community. “My goal of the Walk is to spread awareness of bleeding disorders to every corner of Montana and Wyoming,” Benne says. The reasons are practical as well as aspirational. For many chapter members, the hemophilia treatment center in Denver, Colorado, is an 11-hour drive. “People wind up going to local hospitals and emergency rooms that aren’t as knowledgeable as they could be about bleeding disorders,” Benne says. “The Walk is a great opportunity for our chapter and community to get their stories out there.”

. . .

Read complete article .

Hemophilia Walk

We're also having our first Annual Hemophilia Walk in Bozeman on September 8, 2012 registration beginning at 9:30 am at Bogert Park. Team and Personal Fundraisers compete for the Top Team and Personal Fundraiser Awards in the state from Montana and Wyoming. All proceeds from theses fundraising efforts will benefit Rocky Mountain Hemophilia & Bleeding Disorders Association.

Saturday, September 8, 2012
Bogert Park, 325 S. Church, Bozeman
9:30 am Registration • 11:00 am Walk

To register, donate, create a team, or join a team, visit the event website

An Appeal from Our Executive Director — August 11, 2012

Dear Friends,

As many of you know, our boys, John and Will, have hemophilia. Hemophilia is a bleeding disorder that prevents blood from forming a clot. This is a life long illness with no current cure. The treatment is intravenous replacement of Factor VIII. It is one of the most expensive chronic illnesses and presents multiple obstacles to families who are affected. I am the Director of Rocky Mountain Hemophilia Foundation and we provide education, support, finances, family camp, summer camp opportunities for boys and girls ages 7–18, and many other resources to affected individuals from Montana and Wyoming.

We are in an effort to raise money to continue these valuable services we offer, and appreciate your help. We are having a "Walk for Hemophilia" that is supported by the National Hemophilia Foundation. The Walk is a free community on September 8 at Bogert Park in Bozeman, and registration begins around 10:00 a.m. Entertainment will include a duck race, a live D.J., and face painting, a balloonist and Cryssy's Characters. A free BBQ will be provided for participants. I realize many of you can't attend, but you can still sleep in, save gas, and get a free t-shirt! Thank you very much!

You can help support me by making a secure online donation using your credit card, just Click on this link.

Sincerely, 
Brad, Susan, John, and Will Benne

Mile High Colorado Summer Camp

The Colorado Chapter of the National Hemophilia Foundation's Mile High Colorado Camp will be July 15–20, with a Leadersip Pre-Camp Retreat July 13–15, and sponsored once again by the University of Colorado's Hemophilia and Thrombosis Treatment Center. The Camp will be at Rocky Mountain VIllage in Empire, Colorado.

Who Should Attend?

  • Children with hemophilia or other bleeding disorders
  • Siblings of the above groups

More info and cap forms here .

2012 Family Camp

Each summer, RMHBDA invites affected families living in Montana and Wyoming to attend a weekend retreat. The weekend is packed full of education, bonding, and fun!

Family Camp 2012

June 22 – 24, 2012
Bear Lodge Resort, Dayton, Wyoming
For more information, visit www.bearlodgeresort.com


For the parents and teens, we will have teambuilding programming led by our guest, hemophilia leadership expert, Pat Torrey and some time to relax with other families.

This is a great opportunity to learn from and share experiences with one another. We also have many great activities planned for our campers including arts & crafts projects, field games, and educational sessions for children with bleeding disorders and their siblings. Infusion classes will be offered from HTC RN, Sue Geraghty.

Note that we are also introducing a new, logo specifically for Family Camp to give this event the recognition and identity it deserves.

Facebook

In addition to our new website that we intend to use to provide more and better information, we are also now on Facebook!

Facebook offers us the opportunity to stay in touch with you more in a conversational manner, and allows all of us to quickly share info. So check out our Facebook page at www.facebook.com/rmhbda or click the Facebook logo.

Hi! from our new Executive Director — June 21, 2012

Dear Friends,

RMHBDA strives to provide diverse educational opportunities that add value to the lives of individuals affected with inherited bleeding disorders. There are few challenges greater than providing individuals and families with the knowledge, tools and resources they need to achieve independence; as it contributes to the well-being of their communities. All of our stakeholders — our members, our Board, our staff, and our volunteers — have benefited greatly from RMHBDA's good works. RMHBDA continues supporting families affected with inherited bleeding disorders in Montana and Wyoming by offering access to financial assistance, reasonable access to affordable healthcare, educational opportunities and resources, family and youth summer camp programs, and providing advocacy and awareness opportunities. I look forward to a bright and prosperous future for RMHBDA. If you have suggestions or concerns please feel free to contact me. This is your organization!

Thank you to our sponsors and donors for the continued support to enriching lives.

Sincerely, 
Brad Benne

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