Hull Ranch holds Fundraiser to Raise Awareness of Under-diagnosed Condition called Porphyria

By: Roseanne McKee

(L-R) American Porphyria Foundation Founder/Executive Director, Desiree Lyon, and Mary Hull at the fundraiser event hosted by Hull Ranch on April 11 near Pawhuska.
(L-R) American Porphyria Foundation Founder/Executive Director, Desiree Lyon, and Mary Hull at the fundraiser event hosted by Hull Ranch on April 11 near Pawhuska.

On April 11, Hull Ranch hosted a fundraiser lunch with a silent auction as part of the kick-off of a horseback ride cross-country at night dubbed “the Shadow Ride” to bring awareness to a the disease porphyria. The event’s proceeds went to the American Porphyria Foundation, whose founder, Desiree Lyon, attended the event. The Dustin Pittsley Band provided the entertainment and there were trail rides and bouncy-houses for the kids.

The Hull Ranch fundraiser was hosted by Mary and Tom Hull, whose daughter, Dr. Lisa Kehrberg, a primary care physician in the Chicago area, was diagnosed with an acute type of porphyria in Sept. 2013.

The fundraiser’s purpose is two-fold: to raise funds for porphyria research and to bring attention to the disorders to increase proper and prompt diagnosis, which can be identified through a simple blood and urine tests.

Approximately 2,000 people in the U.S. are diagnosed with a porphyria annually, Dr. Kehrberg said. There are eight distinct types of porphyria each with its own set of signs and symptoms. Some types of porphyria create skin sensitivity to light, called cutaneous.

Michelle MacMeeken suffers from this type, called EPP (erythropoietic proptoporphyria). For this reason, her husband, Scott MacMeeken decided to ride horseback across the U.S. at night, called “The Shadow Ride” to bring attention to the underdiagnosed conditions.

Porphyrias are considered an uncommon genetic disorders according to Dr. Sylvia Bottomley, M.D. an expert on prophyria who attended the fundraiser and specializes in Internal Medicine and Hematology at the University of Oklahoma College of Medicine, where she is an Emeritus Professor.

The symptoms of the type of porphyria from which Dr. Kehrberg suffers are: severe abdominal pain, weakness and numbness, back pain, leg pain, fast heart rate, high blood pressure, respiratory and muscle weakness. Now age 40, Dr. Kehrberg had her first attack in her teens, and has suffered from the disorder for 22 years. Her diagnosis only came recently, however.

Delayed diagnosis is typical, Dr. Bottomley said. “This is why awareness is important because I think porphyria is one of these things that patients take to their doctor and they are not aware,” Dr. Kehrberg said.

Dieting and stress are triggers. Dr. Kehrberg said an attack began after her brother died unexpectedly. She had also been dieting during this time.

“By the time I got the diagnosis, I was going to die or get diagnosed,” she said. “A year and a half ago, I got really sick and ended up hospitalized [in the Chicago area] with all of those symptoms. This was like severe, severe abdominal pain and high blood pressure.

“The first hospital did not recognize it despite multiple tests … and then they discharged me; but I went home and after a few hours I went right to another hospital after that.” She was properly diagnosed at the second hospital, but the effects of the disorder have been life-changing.

“I can’t work now because I’m too sick,” Dr. Kehrberg said. “I’ve had a continuous attack since this happened. Every day I’m in an attack. I feel bad right now. It’s terrible. I have medication I take, but I’m not comfortable at all. It’s worse than labor actually.”

The usual triggers for attacks are: not eating, many medications, hormones and alcohol, Dr. Kehrberg said.

Porphyrias are enzyme deficiencies in the metabolic pathway that makes heme, which Dr. Bottomley describes as “defects passed down from one or both parents – thus genetic abnormalities.”

Kehrberg, said she had inherited porphyria from her biological father’s side of the family. (She is Mary Hull’s daughter from a previous marriage, adopted by Tom Hull.) There were a number of people from that branch of the family tree who died from porphyria before the current treatment was developed, she explained.

“If you are not diagnosed, you can die from porphyria,” Dr. Kehrberg explained. Porphyria can also cause mental confusion and even coma, Dr. Bottomley added.

“Porphyrias began being diagnosed around 1900,” Dr. Bottomley said. “Now we have this hem-therapy, for about 40 years. We give it to patients with acute porphyrias to counteract the effects of the metabolic blocks caused by enzyme deficiencies.”

It is not a cure, however. “It’s only supportive treatment. About a dozen patients with very severe porphyria have been cured by liver transplantation,” she said. “Genetic defects might be cured by putting new genes in and no gene therapy has yet been accomplished in humans,” Dr. Bottomley explained.

“About 90 percent of the people who have an acute intermittent porphyria defect, a PBG deaminase deficiency, never have a complaint in their life. It’s only about ten percent who express it and have symptoms.”

For the ten percent who do experience symptoms, almost always the triggers mentioned bring on acute attacks of the condition. Dr. Bottomley said.

“In the case of alcohol abuse, you can’t manage a patient who drinks. That is because alcohol is metabolized in the liver and the acute porphyria enzyme defects are expressed in the liver. It is here where PBG and ANA accumulated that are toxic to the nervous system.Our nervous system controls motor, autonomic, sensory and brain functions.” Any or all of these functions can be affected.

Glucose (carbohyrdrates) consumption can reduce symptoms of porphyria, Dr. Kehrberg said.

Dr. Bottomley concurred: “we understand the glucose effect because the first enzyme in making the making of heme, called ALAS, is controlled by glucose at the gene level… if you starve, you may get a porphyria attack because that enzyme got induced.”

Dr. Bottomley described how she came to specialize in porphyria: “It began with a patient who had anemia during my residency,” Dr. Bottomley said. “Her hemoglobin was very down; I gave her Vitamin B6 and her numbers soared to normal. That got me started to figure out why that would be. It has to do with heme-biosynthesis, because vitamin B6 is essential for the ALAS enzyme. I found that in some anemias this enzyme is affected in red blood cells.That’s how I got into heme-synethesis research and gravitated into hematology.”

Being in hematology caused her to pay attention to related conditions. She began her career in 1961, she said. “In those days, my lab was the first in the state of Oklahoma to also measure the iron and Vitamin B12 levels in the blood of patients.

Dr. Bottomley said: “To learn about heme-synthesis for my research of refractory anemias, in 1962 I went to the University of Minnesota to study under Dr. C. J. Watson, who was the ‘father of porphyrias’ in the United States.”

Dr. Watson has since passed on, but Dr. Bottomley said, she learned many valuable skills in his porphyria lab, which she then used to diagnose patients with porphyria in Oklahoma over the years.

To conclude, Dr. Bottomley explained that while the causes of all porphyria are now clear at the DNA level by a host of mutations affecting the enzymes of heme-biosynthesis, much research is needed in the field.

“We still don’t understand completely how the toxic buildup of ALA and PGB in acute porphyrias cause the symptoms.Importantly also, the treatment of most porphyrias remains supportive and sometimes not helpful unless the drastic measure of a liver transplant is undertaken.”

To donate to the American Porphyria Foundation, write to: American Porphyria Foundation, 4900 Woodway, Suite 780, Houston, TX 77056.

To learn more about the condition, visit their website: http://www.porphyriafoundation.com.

Secrets of the Pioneer Woman Building

By: Roseanne McKee

As renovations of the Pioneer Woman Deli and shop building progressed, the building began to share its surprising secrets with those working on the project.

General contractor, Terry Loftis of J. L. and Associates, LLC, revealed some of these secrets.

Pioneer Woman Building interior renovation
Contractor Terry Loftis shown on left describes the renovations.

A. J. Hamilton and her crew started the project in summer 2012, and have done 90 percent of the demolition, Loftis said.

Loftis said that the south side of the building, where the Osage Mercantile was originally located, is built on a crawl space.

“Most people don’t believe that but if you go right underneath that plywood right there and I stand on the dirt, the finished floor below the building, it hits me about waist high,” Loftis said.

“Both buildings the last 40 ft. have full basements. What most people really don’t know is that … those were speakeasys in the back of here,” Loftis said.

Prohibition, resulting from the passage of the 18th Amendment to the U.S. Constitution, prohibited the manufacture, sale, transport, import, or export of alcoholic beverages. Illegal nightclubs called “speakeasys” flourished during Prohibition, which lasted from 1920 – 1933, when it was repealed by the 21st Amendment.

After the speakeasys closed, some interesting items were left behind.

“If you go down into the basement, and up over the retaining wall, you cannot crawl six-inches without hitting 15 empty liquor bottles that start at the retaining wall and come all the way to the front. Those will all be removed, because this side will actually have the heating and air conditioning ducts under the floor in that crawl space coming up through the floor. So we’re going to take all those out,” he said. Many of these bottles will be washed and put on display in the new Osage Mercantile, he said.

Another wonderful find, on the south side of the building, was a large granite column, uncovered when they were working to restore the original entrance to the Osage Mercantile.

“We found an old black and white picture that showed this diagonal entry. Sometime after that, they squared it off and covered up this granite column. We started tearing that out, were fortunate enough to find the granite column in pretty much the original shape it was, except for the top and bottom.

Original granite column found beneath facade at Pioneer Woman Building.
Original granite column found beneath facade at Pioneer Woman Building.

Regarding the column, Loftis said, “we found a gossip column in, get this, two daily newspapers that existed here in 1912 talking about the setting of the column. It came from a quarry in Maine by a train from Maine to Tulsa, by buckboard wagon from Tulsa to Pawhuska. It weighs almost 6,000 lbs., 18 ft. tall, almost 30” around, it took 14 men to set it, and cost the owners and astronomical $495!”

In addition, several pieces of antique furniture found in the building are being refinished with plans to put them back into use.
“That table you see was actually found in here under a pile of rubble. Along with the two benches, it was sanded, that was just stained yesterday,” Loftis said. The table and benches will be used in the conference area of the second floor offices, he said.

This restored piece will serve as the conference room table in the Pioneer Woman Building.
This restored piece will serve as the conference room table in the Pioneer Woman Building.

“Over here you’ll see the old original display cases from the Osage Mercantile. These are going to be broken down, refinished and they will be put back downstairs for merchandise display,” Loftis said.

Items found in the Pioneer Woman Building will be re-purposed.
Furnishings found in the Pioneer Woman Building will be refinished and put back into use.

He motioned to the southeast portion of the building, and said that during the work, “we found an entrance that none of us knew existed, this entry back there was probably covered up for almost 70 years. We found it and said, ‘make it match,’ so now you’ll have this entryway all the way around.

As our time drew to a close, Loftis revealed one last secret. The building has many nooks to explore, but the Drummond boys’ favorite is a little room near the commercial kitchen, adjacent to the freight elevator, underneath the stairwell.

Area below these stairs in the Pioneer Woman Building is a favorite hiding spot of the Drummond boys.
Area below these stairs in the Pioneer Woman Building is a favorite spot of the Drummond boys.

Pawhuska School Board Votes Down 4-day School Week

By:  Roseanne McKee

At a special meeting held March 23, the Pawhuska School Board voted against the idea of switching to a four-day school week by a vote of 3-2. Board members voting in favor of the four-day week were Patricia Wilson and Jeff Bute, reasoning that teacher recruitment and morale would be improved. Those against the switch cited the need to raise academic scores and lack of student supervision on the extra day off.

During the discussion, board members Lori Loftis and Christi McNeil indicated support for the five-day week already in place. Board president Justin Sellers did not reveal his position prior to the vote.

Jeff Bute began by saying that he had reviewed several studies by Indiana University from 2002 – 2011.

“Essentially, there are not a lot of numbers out there. If you’re a numbers guy, you’re not going to like it,” Bute explained.

Nonetheless, Bute said, he had found the studies helpful in providing criteria for comparison of those districts with the Pawhuska Public Schools.

According to Bute, schools that had been successful with a four-day week showed positive results in: improved employee morale, academics and money saved. However, he acknowledged that he had not studied the four-day week from a financial standpoint.

“If we go to a four-day week, we’re still required to give 1,080 hours of instruction time to our students. All we’re doing is adjusting the schedule and plus we leave open an opportunity – an open day to actually do some tutoring and other enrichment,” Bute said.

Thereafter Bute made a motion “to adopt the four-day school week for the 2015-2016 school year and provide class offerings on the fifth day, which may include, but not be limited to, enrichment, credit recovery, and tutoring on that fifth day. This motion would be subject to successful negotiations with the negotiation team and for the successful development of a school calendar.”

After some discussion, board member Patricia Wilson seconded the motion.

Board President, Justin Sellers, asked Superintendent Berry about the contention that the fifth day offerings would be part of the negotiations. Dr. Berry said fifth day offerings would not be part of the contract negotiations because they would fall outside regular school hours. Fifth day offerings would require a separate budget and separate teacher recruitment, Dr. Berry said.

After emphasizing that this was a community decision, Superintendent Berry shared that his concerns about the four-day week impact on: academics, student supervision and nutrition on the fifth day, longer school days for young students and the reduction in available professional development days.

Dr. Berry said that in his opinion, the four-day week, “would make an average teacher maybe a little better. I think it would make a great teacher a whole lot better; and I think it would make a below average teacher or poor teacher worse.”

Dr. Berry added that he did not have any proof that the four-day week would improve test scores.

Board member Christi McNeil asked if there were great gains in academic achievement in the schools that switched to a four-day week.  Bute responded by saying there were academic gains and in the larger school districts that were similar in size to Pawhuska’s school district. McNeil also inquired about the socio-economic impact. Bute responded by indicating that he did not study the socio-economic impact, but that he had found that schools were academically successful when they were able to utilize the fifth day for academic enrichment. He said that Montana and Georgia schools had used 4-H on the fifth day for such enrichment, which is free. Locally, he said the 4-H administrator was willing to become involved in such an endeavor.

McNeil indicated the need to study the cost of fifth-day enrichment tutoring before the school adopted a four-day school week.

Dr. Berry interjected, reiterating that the fifth-day enrichment would not be part of the teacher-contract negotiations.

McNeil finished by stating that students could not be required to attend fifth day enrichment tutoring. Dr. Berry confirmed this.

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Images of Spring in Osage County

Bison at Woolaroc
Bison at Woolaroc

Mare and Colt in Osage County
Mare and Colt in Osage County

Colt in Osage County
Colt in Osage County

Deer at Woolaroc
Deer at Woolaroc

Barn near Pawhuska
Barn near Pawhuska

Wildfire near Pawhuska
Wildfire near Pawhuska

Osage Wedding Clothes featured at Tribal Museum

The University of Oklahoma and the Osage Tribal Museum collaborate on Osage wedding Regalia Exhibit

By: Roseanne McKee

On the evening of Feb. 19, the Osage Tribal Museum and Library hosted a presentation about a new exhibit undertaken in collaboration with the University of Oklahoma, which will open in December 2015.

The exhibit, which has taken five years to create, will include of a collection of over 100 Osage wedding photos of from several sources and the display of Osage wedding regalia.

Dr. Daniel Swan a University of Oklahoma professor gave a presentation with photos about the significance of Osage wedding clothing past and present.

“It seemed to us that this was an opportunity to undertake a project that’s still relevant to the community today. It’s close enough in the past that we’re not going back to the nineteenth century. We’re talking about the early twentieth century here.”

According to Dr. Swan, the significance of the regalia is twofold. First, the clothing was worn as wedding attire.

Second, “these wonderful wedding outfits have come to be incorporated into the passing of the drum or the paying of the drum,” Dr. Swan explained.

As he showed photos, he added, “you’ll notice that people have made identifications on the photos, which makes these collections stronger also.”

Because of the many requests to see the photos, a website has been created called http://www.osageweddings.com and over 6,000 people have visited the site, Swan said. “I really encourage you to visit the website to piece together these important stories of Osage history.”

The sources of the historic photographs gathered were: the Osage Tribal Museum, the University of Oklahoma’s Western History Library and a number of private collections.

The exhibit also provides a window into some of the customs associated with Osage weddings in the early twentieth century.

“We basically have the photographs to tell the story of a traditional Osage wedding from the very beginning of the negotiative process between the families, all the way to the completion of the wedding and the formation of a new family. It’s just tremendous,” he said.

Explaining this negotiation process, Swan said, “one of the things that my colleague, Jim, has turned up is a wonderful set of photographs that document the taking of food to the bride’s family, so for four mornings we have this procession where they’re taking the food every day as part of this negotiative process.”

In addition to showing photos, Swan played a silent film of an Osage wedding in the 1920’s and described additional details of the wedding.

“One of the things we learned was that each day the family would eat the food and put the dishes out at the end of the driveway and if those dishes were put back out washed, that meant that the negotiations were still open and they would expect for food to be brought again the next day. If those dishes were put out at the end of the driveway and they weren’t cleaned, it was over. Everybody packed up and went home. The negotiations had broken down.”

In gathering information for the exhibit, “the Osage people and members of the community, have been incredibly generous and forthcoming in sharing these resources,” he said.

Swan was impressed with the abundance of information people had shared for the exhibit. “We have the words of the Osage people themselves…. To me it’s just amazing that we have the voices of the Osage people to tell the story.”

“There are wonderful oral history materials,” Swan said, citing the Doris Duke collection, which funded a number of oral history projects around the country in the 1960s with Native American communities, which are kept at the University of Oklahoma. “It’s one of the few collections where community members interviewed community members,” he added.

“Our own Kathryn Red Corn did some interviews for this. She did some really important ones. Leonard Maker, Sr., did a lot of these and his wife did a lot of these interviews.”

“Vann Bighorse at the Wahzhazhe Cultural Center has a complete set of the recordings, which is really important,” Dr. Swan said.

Whereas in the past only transcripts were available, Swan explained that now, “you can go over there, any time the library is open, and listen to those recordings” at the Wahzhazhe Cultural Center in Pawhuska.

Another oral history project that provided helpful information for this exhibit was the White Hair Memorial, located between Hominy and Fairfax in a 1920s-era home which had belonged to Lillie Morrell Burkhart, a descendant of Osage Chief Pawhuska (White Hair).

A past project also provided helpful material. Beginning in 1983, Dr. Swan worked with Maurice Lookout to take on a project in which Osages interviewed Osages. Lookout and John Henry Mashunkashey had interviewed all of the members of the Pawhuska Committee “about the dance and the passing of the drum and the responsibilities of the drumkeeper and the other committee members,” Swan said.

“This was the year that Vann Bighorse took the drum, so it’s this wonderful resource – this glimpse into the workings of the committee and how you put a committee together and how you get ready to pay for the drum.” These recordings are available for listening at the White Hair Memorial, Swan added.

“There’s a wonderful recording in the series he did with his Aunt Mary Standing Bear Lookout in which she talks about a wedding outfit and she goes through and discusses each and every piece and the care that she took when she put these outfits together to help someone pay for the drum,” he said.

There are many archival sources and “an incredibly rich body of material out there” on the subject of Osage wedding regalia, including the Bartlesville Historical Society, Swan said.

“They have wonderful materials. We’ve been able to find great documentation over there. A lot of these weddings were written up in the newspapers of Tulsa and Bartlesville.”

Swan shared that Romaine Shackelford, had conducted research of government documents on microfilm at the Osage Tribal Museum, and made a significant discovery.

“Low and behold, he turns up a letter from the Commissioner of Indian Affairs writing the Superintendent of the Osage Nation, the agency, in which he said, ‘we received your letter requesting a chief’s coat for 17 Osage chiefs. We’ve received their measurements and on our next visit, we’ll bring them.’ This shows this continuous process of using these coats as symbols of authority and respect – that there was this continual supply coming in to them,” Swan explained.

“It’s clear that eventually that supply of old military coats exceeded the demands of the community and that people up here started to make these coats. These are stories that we’re working on right now – the different mechanisms that Osage people have employed to build their inventory of coats.

“Lastly, we’ve undertaken a series of interviews about more modern times and the construction of coats and their use in paying for the drum,” Swan said.

Swan encouraged guests to visit the University of Oklahoma’s website: http://www.ou.edu for digital collections such as Doris Duke’s, the Indian Pioneer Papers, the Native American Manuscripts, photographic archives, which are all free and available to be downloaded from the website.

Delaware Tribe Hosts Housing/Loan Seminar — All Tribes Welcome!

On Tuesday, Aug. 19, the Delaware Tribe will host a Housing/Loan Seminar at the Delaware Tribal Complex, 170 NE Barbara, Bartlesville, Okla., in Forsythe Hall at the Community Center at 6 p.m.

The seminar, presented by Legacy Tribal Consultants, will provide details of the Section 184 Native American Home Loan program. This event is free and open to the public. A question and answer session will follow the presentation.

The Section 184 loan program offers competitive, low mortgage interest rates for: home purchase, refinance, rehab or construction including double-wide and modular homes — and loans are not limited to property on tribal lands.

Approved borrowers must be members of a federally recognized tribe with photo I.D. and tribal registration card.

Unlike traditional loan programs which are credit-score driven, Section 184 loans do not require a particular credit score. Instead, borrowers must demonstrate a pattern of good rental or mortgage history for the past two years, have all credit collections, judgments and tax liens paid, and have two years of work history in the same line of work and/or school enrollment.

Approved borrowers must be currently employed with verified income and those with past credit problems must provide written explanations of derogatory credit.

The loan program, guaranteed by the Dept. of Housing and Urban Development (HUD), has lower down-payment requirements than traditional loan programs. The Section 184 loan program offers borrower down payments of only 2.25% for mortgages over $50,000 and just 1.25% for mortgages under $50,000.

In addition, the source of down payment funds may be: borrower’s own funds, gift funds, secured loan funds or tribal down payment assistance.

Another attractive feature of the Section 184 loan program is that in purchase scenarios, contracts may specify that sellers pay prepaid fees, such as taxes and insurance, and other costs at the home closing. For more information, call the Delaware Tribe of Indians at 918-337-6590.

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Osage Ballet to hold July performances in Skiatook and Miami

IMG_1445b

(L-R) Sean Steigerwald, Arthur Rocha, Sasha Kotelenets and Chad Jones. Photo by: Bill Riley

By: Roseanne McKee

“Wahzhazhe” an Osage Ballet will again grace the Oklahoma stage. The Osage Ballet will hold six July performances of “Wahzhazhe, an Osage Ballet,” at two Oklahoma venues — Miami and Skiatook.

Three performances will be held at the Skiatook High School: July 18, 19, at 7:30 p.m. and July, 20, at 2:30 p.m. at 1000 W. 4th St., Skiatook, Okla.

In addition, there will be three performances at the historic Coleman Theater in Miami, July 25, 26, at 7:30 p.m. and July 27, at 2:30 p.m. at 103 N. Main St., Miami, Okla.

The director, Randy Tinker Smith, made the decision to hold these summer performances following the warm reception by audiences in 2013 at the Tulsa Performing Arts Center, Bartlesville Community Center and the Smithsonian in Washington, D.C.

Smith said that the ballet “Wahzhazhe” tells the story of the Osage people from their first encounters with European visitors to the present day. Called the “Masters of the Battlefield” and sometimes referred to as the happiest people in the world, the Osage people monopolized trade because of their organization and order. Highlights of “Wahzhazhe” include: the Osage’s journey to Oklahoma territory, their wealth through the discovery of oil in the minerals estate, and the manner in which they now walk in two worlds.

The Osage Ballet operates under the Arts and Humanities Council of Tulsa, 101 E. Archer St., Tulsa, OK 74013, as a non-profit organization.

“We appreciate donations from the Osage Nation Foundation, Iron Hawk Energy Group and other area oil businesses,” Smith said. “These donations help us continue to bring the story of the Osage people to the Oklahoma stage.”

Tickets are available at to door for $10 for children and seniors and $12 for adults.

For more information, or to make a donation, contact the Osage Ballet at 918-704-4668 or via e-mail at osageballet@gmail.com.

Donations to the Osage Ballet may be mailed to: the Arts and Humanities Council of Tulsa at 101 E. Archer St., Tulsa, OK 74103.

Visit the Osage Ballet Facebook and the website at: http://www.osageballet.com for photos and updates.