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WHAT IS A REGIONAL NETWORKING ALLIANCE?
A Regional Networking Alliance is a group of individuals united through a common purpose. It is an informal group of empowered volunteers that work closely with the HHT Foundation to facilitate local connections for individuals and families affected by HHT. A Regional Networking Alliances mission may vary according to the needs of the local community. The Regional Networking Alliance is meant to foster stronger links between the HHT Foundation, local communities, and individuals across the country.
DIRECTORY OF REGIONAL NETWORKING ALLIANCES:
Regional Coordinator: Denise Hitzeman,
Contact Information: hhtnorcal@sbcglobal.net
Regional Coordinator: John Muglia
Contact Information: johnjmuglia@yahoo.com
States Represented:
Michigan
Regional Coordinator: Carol Gaertner,
Contact Information: carolgaertner610@msn.com
States Represented:
Regional Coordinator: Pending
Contact Information: sharon.williams@hht.org
States Represented:
Regional Coordinator:
Contact Information: pschopharmrx@yahoo.com
States Represented:
Regional Coordinator: Meg Johnson, DePere,
Contact Information: lmj13223@yahoo.com
States Represented:
Regional Coordinator: Delaine Elle,
Contact Information: celle@telus.net
REGIONAL NETWORKING ALLIANCES – EVENTS AND ACTIVITIES
California North Central RNA
Regional Coordinator: Denise Hitzeman, Scotts Valley, California
Contact Information: hhtnorcal@sbcglobal.net
ACTIVITIES REPORTED:
FIRST N.C. CALIFORNIA MEETING HELD
Los Gatos, California
March 3, 2007
The North Central California Meet and Greet meeting was a huge success. It was held at Aldos Ristorante & Bar in Los Gatos, California on Saturday March 3rd from 2:00 pm to 4:00 pm.
Fifteen members attended the meeting. All the members got to know each other over appetizers and sat down to a wonderful Italian lunch during the meeting. The group broke into small groups and brainstormed about some of the things they wanted to see accomplished for this group.
Most ideas had to do with communication between their group members. Some of the most animated discussions came about when the members were sharing which doctors in the area knew anything about HHT, and who they were. Kaiser was another huge topic, and along with that came discussions on insurance and how to get to HHT Treatment Centers of Excellence.
Other Goals of the group:
- Educating doctors in local communities
- Ability to network with N.C. California RNA members relating to lifestyle, new symptoms, etc.
- Preparing to manage HHT in your child
- Fundraising
- Legislative Advocacy regarding non-discrimination in Genetic testing
- Working with local representatives
Denise commented, we are off to putting together a very cohesive group that is motivated to see change in their communities. Everyone went away with good information and we are all motivated to bring awareness up.
The group is working on finding a centrally located facility that could donate a room for the group to meet. If anyone knows of such a place, please contact Denise. In the past, schools, libraries, and hospitals have provided such accommodations.
MERMAID 5K RACE
Freemont, California
March 25, 2007
Denise Hitzeman, the Regional Coordinator of the North Central California RNA, was on the run again for HHT. This time she ran in the Mermaid 5K Race that took place on Sunday, March 25, 2007 at Coyote Park in Freemont CA. Denise comments, If my purpose in life is to carry around an extra 10 pound oxygen tank, then I will strive to make it the perfect catalyst to educate medical professionals, and the general public about this commonly misdiagnosed disease and to promote the benefits of healthy lifestyle and exercise.
Denise is dependent on therapeutic oxygen and trained twice a week at Dominican Hospitals Cardio and Pulmonary Therapy in Santa Cruz, CA. under the watchful eye of Cathe Pleasant, RRT, RCP and Michael Ellison, M.D. The Lifestyle Management Program has saved my life, and Cathe has inspired every patient that is fortunate enough to walk through her door. Cathe ran side by side with Ms. Hitzeman on Sunday, March 25th; to see this goal become reality.
Each year Cathe and the other medical professionals at Dominican Hospital encourage their patients to strive for a goal. A few years ago Denises goal was to sing her children to sleep. Today she is training to run marathons. It is the best medical advice I have been given says Denise something to get my body, mind and spirit off the couch.
WHARF TO WHARF RACE
Santa Cruz, California
July 22, 2007
Each year, on the fourth Sunday in July, thousands of runners from across America and around the globe return to Santa Cruz, California for the annual six-mile race to Capitola-by-the-Sea. You may recall reading about Denise when she first ran the Wharf to Wharf race in July of 2005. Denise is running the race again for HHT Awareness and will be joined by 3 other members of the N.C. California RNA.
First run in 1973 by a handful of locals, the Wharf to Wharf Race today enjoys a gourmet reputation in running circles worldwide. Its scenic, seaside setting, perfect weather, and festive beach party atmosphere make it a favorite of casual joggers and elite athletes alike. Limited to 15,000 runners on a first-come-first-served basis, its field sells out months in advance. Runners are thrilled just to get in!
Denise has invited Friends, Family, and RNA members to a Wharf to Wharf Crossing the Finish Line Celebration on July 22nd after the race from noon to 2:00 pm. at Hidden Glen Park and Pool. Denise states, This is a party for all of our community because none of us could have done it alone!
Massachusetts - New Regional Network Alliance Launched
The HHT Foundation was proud to announce the launching of our 7th Regional Network Alliance at the Northeastern Regional HHT Patient and Family Conference held in New Haven, CT on October 13, 2007. The conference gave many attendees from Northeastern states a chance to get together with other individuals with HHT. One gentleman was quoted as stating, “This is the first time I have been in a room with other people that have HHT besides family members. It helps to know you are not alone.”
The new Massachusetts RNA will be lead by John Muglia. John is the president of his own company, Community Health Training Solutions. He has been doing public speaking for years and is well versed in the medical community. John has known he has HHT since childhood. His main interest is fundraising, legislative pursuit for federal funding, and education. This group is just organizing so please feel free to contact John to get involved and help make a difference. John’s contact information is listed below.
Regional Coordinator: John Muglia, Chicopee, Massachusetts
Contact Information: johnjmuglia@yahoo.com
Phone: 413-598-9911
States Represented: Massachusetts, New Hampshire, Connecticut, Rhode Island, and Vermont
Michigan RNA
Regional Coordinator: Carol Gaertner, Saginaw, Michigan
Contact Information: carolgaertner610@msn.com
States Represented: Michigan, Ohio, Indiana
ACTIVITIES REPORTED:
PHYSICIAN & FAMILY EDUCATION
HHT is classified as a rare disorder. Rare disorder is defined as less than 200,000 US citizens having the disorder. The National Organization for Rare Disorders report that there are over 6,000 rare disorders. You can only imagine the challenge that the Medical Community has in keeping up with all these disorders. As a result of this lack of knowledge by the public and medical community as a whole, 90% of the HHT population (that represents approximately 68,000 people in the US) are not yet diagnosed or are misdiagnosed. As a result, they are not receiving proper treatment and could experience a stroke, hemorrhage, and even death.
The Michigan RNA group was frustrated by this situation, as we all should be. Instead of just complaining about the situation, they decided to do something to help. Under Carols leadership, the RNA group contacted the HHT Foundation office to obtain the most current HHT informational documents geared for physicians and the general public. To date, this group of dedicated individuals have sent out over 40 packets of HHT Educational materials to physicians in their communities as well as some individuals in their own extended families.
PLANS REPORTED:
FIRST MEETING IN PLAN FOR THIS SUMMER
The Michigan RNA group is working on organizing their first meeting hopefully by the end of summer. Right
now the group is made up of 14 families from Ohio, 8 families from Indiana, and 18families from Michigan. The logistics is difficult, so more than one meeting may be held. Carol will keep all informed of the meeting time and place.
Minnesota RNA
Regional Coordinator: Pending
Contact Information: sharon.williams@hht.org
States Represented: Minnesota, South Dakota and North Dakota
ACTIVITIES REPORTED:
HHT IN THE LOCAL PRESS
International Falls, Minnesota
March 2007
Nancy Shermoen had been working hard to increase education and awareness about HHT. Recently she scored a big win for HHT by getting her story published in the local paper. On March 7, 2007, the International Falls Daily Journal published My HHT Story, by Nancy Shermoen. You can view Nancy’s article by typing the following URL into your web browser: http://www.ifallsdailyjournal.com/node/2039. By writing her story and getting it published, Nancy has educated hundreds of individuals about HHT who may not have ever heard about HHT otherwise. The press is a very important vehicle in getting the word out about HHT. Thank you Nancy!
Tennessee RNA
Regional Coordinator: Cassie Hamilton, Nashville, Tennessee
Contact Information: pschopharmrx@yahoo.com
States Represented: Tennessee, Georgia, North Carolina, South Carolina, Kentucky, Alabama, Mississippi
ACTIVITIES REPORTED:
FIRST MEETING
Augusta, Georgia
June, 2007
Many of the members of the Tennessee RNA group attended the HHT Treatment Center of Excellence Patient Workshop that was held on Saturday, June 23rd. This presented the perfect opportunity for the RNA group to have their first meeting and the HHT Center was generous enough to donate the space for the meeting. Not all members of the RNA group were able to attend this meeting but they did have approximately ten individuals in attendance. Cassie reported, We had a great meeting in Augusta. We all shared our stories and got to know each other face to face.
Many ideas were discussed by the group, including the desire to educate doctors at local hospitals. The group is developing a one-page letter and the HHT Foundation will provide the physicians with education materials. Several members of the RNA group stepped forward to send out the mailings.
As the discussion progressed, the importance of fundraising became apparent. The group recognized the importance of this objective and a chairperson volunteered to drive this initiative. Cassie volunteered to continue to drive the Legislative arena.
PLANS REPORTED:
SECOND MEETING
The group is excited about their initial progress and want to keep the momentum going. The next meeting is targeted for late summer or early fall for the Atlanta area. Please contact Cassie if you are interested in being part of this group.
Wisconsin RNA
Regional Coordinator: Meg Johnson, DePere Wisconsin
Contact Information: Lmj13223@yahoo.com
States Represented: Wisconsin, Illinois, Iowa, Kansas, Missouri
ACTIVITIES REPORTED:
LEGISLATIVE DISTRICT MEETING WITH CONGRESSMAN KAGEN OF WISCONSIN
Appleton, Wisconsin
April 11, 2007
Meg Johnson wasn’t able to make it to Capitol Hill Day but she didn’t let that stop her. She went out of her comfort zone because she knows how important it is to get federal funding for HHT. So she picked up the phone and arranged a meeting with Congressman Steve Kagen of Wisconsin’s 8th District when he was in his home district. Meg notified her RNA group and had 3 other members of her group join her in this important meeting.
Meg states, “We met with Dr. Kagen and a member of his staff, Mr. Craig Mosier, on April 11, 2007 in Appleton Wisconsin. As a physician, Congressman Kagen seemed very interested in our discussion of HHT. We had the opportunity to discuss the disorder, and specifically, how it affected our families. As most first meetings, we only had about 15 minutes of Dr. Kagen’s time, so we made sure our message was concise. Two days prior to our meeting, I sent Dr. Kagen’s office some printed HHT information which made our meeting more productive.”
The members of this RNA group that attended were Jean Bauer, from Appleton WI., Sandy Gabavics, from Shiocton WI, Meg’s sister-in-law, and Meg’s husband Larry. These individuals can be proud of their accomplishment. We now have one more Congressperson educated on HHT and a potential supporter for our cause.
LEGISLATIVE INITIATIVE
On-Going
The Wisconsin RNA group has been communicating through emailextensively regarding its participation in the HHT LegislativeInitiative. As a result of their efforts, many members are sending letters and calling their members of
Congress.
PLANS REPORTED:
OUTREACH TO EXTENDED FAMILY
The next activity the group will be considering is an outreach effort to all the RNA members’ extended family. Meg states, “During the session “Emotional Aspects of HHT” that I attended during last year’s conference, someone brought up the issue of letting other relatives in the family know about HHT. That person was concerned about the fact that others in the family could be at risk, how to tell them, etc. Her concerns resonated with me. I committed to myself at the National Conference in San Diego, that I would do all I could to let OUR extended family know about HHT. So, I did a one page letter, describing HHT and how our immediate family was affected, as well as how we believe it was passed on. I sent along a brochure on HHT, and also said I would be GLAD to answer any questions or concerns, via phone, mail or e-mail. (Also provided the HHT Foundation phone number and website). Being that I’m ‘married into’ this family, I included a second page titled, WHO DID I MISS? I gave an explanation of how important this info is, and a list of who I sent it to, and asked if they knew of anyone else in the family who should get the information. If so, I asked them to please send their name and address to me, so I could send the information to them. I included a stamped self-addressed envelope for them to send the additional names to me. It SURE was worth it!! I’m really glad I did it. ONE of the responses was a handwritten letter that began with: I can’t thank you enough for the information you sent me on this family disorder”.
Canada (Western) Support Group
Regional Coordinator: Delaine Elle, Edmonton, Alberta
Contact Information: celle@telus.net
ACTIVITIES REPORTED:
HHT BENEFIT DANCE, Edmonton, Canada,
March 2007
Written by Delaine Elle
I am not able to run, jog or golf for fund raising like some HHT patients and families, because of the extensive 8 inch AVM in my hip. After attending the Virginia HHT Conference, I started thinking about what I could do to support HHT Research.
My husband, Clarence, and I approached our Square Dance Club about my idea of hosting a Benefit Dance. With excitement, we started planning a fun evening of dancing, door prizes and lunch. We invited other Square Dance Clubs to attend our March 3rd event.
Education awareness and fund raising was our goal. At the dance I shared a summary of the first page of Learn More AboutHHT, and a little of my journey with AVMs and HHT. I was asked to submit this presentation to the Edmonton and Area Square Dancers Newsletter. There were opportunities to share the website and HHT information. A few dancers expressed concerns for their own or their familys nosebleed problems.
Donations were received at the event as well as letters that were sent out to family and friends. We hope fund raising will be an on going venture with our Support Group.
Think about what you can do to raise funds for HHT. You can make a difference! If not us, then who?
PLANS REPORTED:
WESTERN CANADA SUPPORT GROUP MEETING
Dr. Dilini Vethanayagm, University of Alberta Hospital Pulmonologist and Director of Edmonton’s HHT Center, will speak on HHT as related to Lungs at the next HHT Support Group Meeting on Saturday, October 20, 2007 from 10am-noon, at Bethlehem Lutheran Curch, 4638-117 Ave, Edmonton, AB. You are invited to attend this HHT Support Group Meeting. Invite your doctors, dentists, health care providers, family and friends. If you require more information, please email Delaine at celle@telus.net.
WHY JOIN A REGIONAL NETWORKING ALLIANCE?
There are no limits to what can be accomplished when you enlist the power and potential of individuals working together for a common purpose. A Regional Networking Alliance can provide a forum for individuals to share their concerns and experiences. In a Regional Networking Alliance, you can discover the tools you need to utilize on a day to day basis, finding answers to your questions, and obtaining access to resources and services.
The Regional Networking Alliance is working together as a collective voice to improve the quality of life for all those affected by HHT and their families. While each individual may have slightly different expectations, the Regional Networking Alliance is empowered by its common mission and passion for achieving its objectives.
Regional Networking Alliances are critical to the mission of the HHT Foundation. We recognize and value the Regional Networking Alliances local expertise, their ability to reach out to others affected by this disorder in their area, their understanding of this disorder, and their ability to make a real difference. The HHT Foundation will work hand in hand with the Alliances to provide support and resources when and where needed.
SUGGESTED GOALS FOR A REGIONAL NETWORKING ALLIANCE:
Support and Education
- Share valuable tips on daily management of HHT
- Connect individuals or families with “mentor” members who can help them acclimate to new information
- Hold regular meetings, in person or online, where individuals and family members can share information
- Maintain a contact list of members
- Publish a newsletter
- Maintain a telephone hotline
- Maintain an electronic mailing list
- Hold periodic events where individuals and families can relax and socialize (e.g. summer picnics or winter holiday parties)
- Enlist a featured speaker to stay abreast of cutting edge HHT progress
Educate your community about HHT
Raise public awareness of HHT by distributing information to targeted groups:
- Health centers (including those at schools and colleges)
- Dental offices
- Hospitals
- Doctors offices
- Pharmacies
- Departments of Health
- School nurses
- Nursing associations
- Like-minded organizations
- Send editorials and press releases to local television news and newspapers
- Build local media relations
- Educate local and state school districts on HHT manifestations and management
- Local/state government advocacy
- Organize community events to raise funds for the HHT Foundations mission: Education, Research and Advocacy
- Golf Tournaments
- Walkathon and Bike Rides
- Letter Writing Campaigns
- Cocktail Charity
- Raffles
- Sports Tournaments
- Auctions
- Casino Night
- Dance Marathon
- Car Wash
- Garage Sales
- Read more in the Fundraising section
HOW DO I START A REGIONAL NETWORKING ALLIANCE?
The HHT Foundation International can assist you with beginning a Regional Networking Alliance. It only takes six people to form an alliance. A Regional Networking Alliance must have a Coordinator or Co-Coordinators. It is recommended that a Regional Coordinator have a positive attitude, a sense of commitment, good people skills, and the ability to delegate.
The number of meetings –monthly, quarterly, etc.– is determined by the needs of the group.
Responsibilities of the Regional Coordinators:
- Keep your knowledge about HHT up to date by reading Tri-Annual Newsletters, HHT Electronic Alerts, and attending HHT Conferences when possible
- Agree to have their name and email posted on the HHT website
- Maintain a local Contact list of members
- Set-up, publicize, and run the meetings
- Find potential volunteers areas of interest and match to the groups needs
- Communicate upcoming events, news coverage, etc to the HHT Foundation Office
- Complete a Regional Networking Alliance Program Form annually that identifies information on the programs, meetings, speakers and activities during the past year
Responsibilities of the Regional Networking Alliances:
- Set goals for your Regional Networking Alliance
- Identify working committees as needed
- Ensure that only qualified professionals serve as speakers at meetings where medical issues are discussed (approval needed from HHT Foundation International)
- Honor the confidentiality of individuals attending meetings
Responsibilities of the HHT Foundation International:
- Connect you to a dedicated staff member who can assist you with initial organization and on-going support
- Provide names and addresses of interested HHT individuals in your geographic area Note: Confidentiality is guaranteed. Individual permission to realize information is always obtained.
- Distribute updated HHT educational and informational materials
- Assist in providing you a speaker for a local meeting
- Highlight the activities of your Alliance in our newsletter, Direct Connection
- Provide a dedicated page on the HHT Foundation International website with Regional Networking Alliance Information and upcoming events
Below are current Regional Networking Alliances (RNA). If you would like to join one of these groups, please feel free to email the Regional Coordinator for that area. If you would like to learn more about the benefits of becoming a member of an RNA, or learn how you can start an RNA in your area, please contact the HHT Foundation office at (800) 448-6389 or email Sharon Williams at sharon.williams@hht.org. Our goal is to have one RNA for each state; therefore we have adopted a policy to name each RNA group based on the state in which the Regional Coordinator resides.
There are no limits to what can
be accomplished when you enlist the power and potential of individuals working
together for a common purpose. Thank you
to all who support and participate in these critically important alliances.
