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Patients with Friedreich’s Ataxia Are Fighting Back

25th Jul 2014 Friedreich's Ataxia

Friedreich’s Ataxia impacts one in every 50,000 people within the United States. This neurological disorder can impact people of all ages but typically starts in childhood. The disease ravages the body to the point that most people only live ten to twenty years after being diagnosed before they need help of a wheelchair and eventually become incapacitated. This is a terrible way to live, and Dr. Robert Dean has been working with the Friedreich’s Ataxia Research Alliance (FARA) to help find a cure.

Recently, several people diagnosed with the disease have decided to fight back. Rather than being held down by the disease, they are stretching the boundaries of what it means to be someone diagnosed with it. In so doing, they are raising needed awareness and funds for the cause.
Barry Rice, a 34-year-old man from Ireland, has participated in putting together the first race for Friedreich’s Ataxia in the area. Cycle Ataxia will take place on August 10th in Ashbourne, and Mr. Rice is hoping that 500 cyclists will participate. He will be on hand in his wheelchair, participating in the event as much as possible. He was diagnosed with late onset Friedreich’s Ataxia and is able to do more things that many people who suffer from the disease. Still, he is confined to a wheelchair and has difficulty doing simple tasks like tying his shoes. He wants to raise awareness so that others suffering from the disease know they are not alone, and more money can go towards research.

The Fryatt family will be climbing Mt. Kilimanjaro this October to raise awareness for the disease. This would be a feat in and of itself but is made more so by the fact that Iain Fryatt has Friedreich’s Ataxia. Climbing a mountain would seem out of reach for most people suffering from a neurological disorder but the Fryatt family is determined. He will be using a Mountain Trike to ascend the mountain. The device will allow him to steer using a lever, and it will be the very first time someone has attempted to climb Kilimanjaro using one. The climb will take them over a week, and they are hoping to raise over $10,000 for the climb. The money will then be given to research.

Both Barry and Iain are not letting Friedreich’s Ataxia slow them down or define their life. They are true heroes that are committed to using their abilities to help others suffering from the disease. Instead of focusing on what they cannot do, they are focusing on what they can do.
As a humanitarian and physician, Dr. Robert Dean believes in the power of joining together to support a cause. Since working with FARA, he has witnessed money going into research with clear results. They now know what causes Friedreich’s Ataxia and are testing ways to implement a cure. There is still a long ways to go but with scientists, community leaders, patients and physicians like Dr. Dean working together, anything is possible.

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Surprise Performers Join The Starkey Hearing Foundation Gala

18th Jul 2014 Starkey Hearing Foundation

The Starkey Hearing Foundation So The World May Hear Gala will take place on July 20th in St. Paul Minnesota. This high-octane annual event will be jammed packed with celebrity performers and humanitarians from throughout the world. The foundation was pleased to announce that this year’s surprise performer is Grammy-Award winning artist, Rob Thomas. This is set to be an incredible and unforgettable evening as Rob Thomas takes the state with Sammy Hagar and John Legend.

Each year the gala raises money to further the efforts of The Starkey Hearing Foundation to give the gift of hearing to children throughout the world. Humanitarians, activists, donors, volunteers, and celebrities come together for one purpose and one cause – helping children to hear. This is a monumental goal, and the foundation has been to over one hundred countries thus far. Each trip, each encounter, is life changing, and this one night honors those that make that mission possible.

Dr. Robert Dean has been privileged to work closely with The Starkey Hearing Foundation and has already been on multiple global medical missions with their group. He has traveled the far reaches of the globe, experiencing firsthand the life-changing gift that hearing brings to a child. It is one thing to be a physician in the United States where healthcare is readily available. It is completely different to work in a country where your help may be the only medical help that child ever receives. He has witnessed how a child, after being fitted with a hearing aid, is accepted back into a society that had previously viewed them as an outcast. Hearing does more than open up a world of sound. It enables children, and adults, to be an active and contributing member of society that will change the course of their entire life.

This year’s So The World May Hear gala will be full of star performers like Rob Thomas, who believe in the foundations mission. While it is easy to get caught up in the hype of a celebrity endorsed organization, The Starkey Foundation has been very conscious of its primary mission, to bring hearing to the world. As such, it has made a concerted effort to work with local organizations and governments to provide hearing aids and, even more importantly, access to long-term hearing health care in places it would be least expected. Using an effective three-step approach the foundation has worked effectively across cultures and continental boundaries, something that Dr. Robert Dean is an active part of.

This July 20th, the foundation once again hopes to bring a spotlight to the need for the global hearing initiative while commending those who are giving a portion of their lives to making the world a better place. Dr. Robert Dean will be in attendance, once again lending his support to a cause worth fighting for. To learn more about the foundation, its goals or its mission visit www.starkeyfoundation.org.

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Secretary Hillary Clinton to Speak at The Starkey Hearing Foundation Gala

17th Jul 2014 Starkey Hearing Foundation

Dr. Robert Dean has been privileged to support The Starkey Hearing Foundation in their efforts to give the gift of hearing to children throughout the world. This year’s special guest speaker is none other than the renowned Secretary Hillary Clinton. Fresh off her worldwide book tour, Clinton will be lending a hand to a cause worth fighting for.

The Starkey Foundation has been incredibly blessed by the presence of celebrities from all over the world who truly care about giving the gift of hearing. Many celebrities and humanitarians will be attending the annual So The World May Hear gala in St. Paul MN. The Starkey Hearing Foundation has used this function to recognize and honor those who have made hearing possible through their generous donations of time and money, and this year is no exception. This year, the So The World May Hear gala will take place on July 20th, 2014 so that humanitarians, volunteers, and donors can be recognized as those that make the foundations work possible.

This year the gala, and all of those involved with the foundation are pleased to announce a very special guest. For many years now the Starkey Foundation has received a great deal of support in its mission to spread the gift of hearing from the Clinton Foundation. This year the So The World May Hear gala is going to be the host to special guest speaker former Secretary of State Hillary Clinton. Secretary Clinton has been a longtime supporter, through both the Clinton Foundation and the Clinton Global Initiate, but this is the first time she will be joining the Starkey foundation and its guests for the gala. Given her busy book tour and political efforts, the foundation is truly honored by her presence and the commitment it shows to children around the world.

With a list of humanitarians that feature the Archbishop Desmond Tutu, Forrest Whitaker, Prince Seeiso of Lesotho and Sandi Young, this year’s gala promises to be spectacular. Dr. Robert Dean, the Florida-based humanitarian, physician, and journalist has already announced his intention to attend year’s function. Adding Secretary Clinton, as the guest speaker, is both profound and exciting for the foundation.

Beyond the glitz and glamour of a once a year event, The Starkey Hearing Foundation has been a worldwide advocate at the forefront of the global hearing initiative. The founders, Bill and Tani Austin, believe that there is no such thing as a disability only ability and have built an organization that takes this message the furthest reaches of the earth. As of this year the Starkey Foundation has visited over one hundred countries and has delivered and equipped over 1.43 million people with hearing aids. As they traverse the planet helping people hear The Starkey Foundation, and volunteers like Dr. Robert Dean have changed countless lives bringing a whole new world of possibility and opportunity to millions of people.

You too can make a difference by supporting The Starkey Hearing Foundation. Learn more by visiting www.starkeyfoundation.org.

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Dr. Robert Dean to Attend the Starkey Hearing Foundation Gala

15th Jul 2014 Starkey Hearing Foundation

Each year the stars align over St. Paul MN, and the supporters and fans of the Starkey Hearing Foundation will come together to celebrate giving the gift of hearing to children throughout the world. At the So The World May Hear gala the spirit of giving will be once again honored, and those who have taken the time to participate and give back to the community will have a spotlight shone upon their generosity. The event is designed to showcase the tremendous impact caring individuals can have on their fellow man and encourages each person to reach for their full potential. The gala celebrates the achievements of those who are willing to work to make the world a better place, people like Dr. Robert Dean, who has been traveling the world with the Starkey Hearing Foundation to give children one of the greatest gifts of all – the gift of hearing.

This year the So The World May Hear gala will take place on July 20th, 2014. Among the humanitarians that will be honored are the Archbishop Desmond Tutu, Forrest Whitaker, Prince Seeiso of Lesotho and Sandi Young with performances by Sammy Hagar and John Legend. Dr. Robert Dean, the Florida-based humanitarian, physician, and journalist will also be in attendance at this year’s gala. The gala has even greater significance this year as it falls on co-founder Tani Austin’s birthday, and founder Bill Austin has committed to matching all donations, up to $100,000 that come in through Tani’s birthday on the 20th of July. This is a fantastic opportunity for people to contribute and have that contribution make an even greater impact.

The Starkey Hearing Foundation has become a global force to help people achieve their full potential. Believing that there is no such thing as a disability, only ability, the foundation has travelled the globe delivering people from a world filled with silence. To date the Starkey Hearing foundation has visited over one hundred countries, partnering with local and international organizations to bring their vision of hearing for everyone to the most remote parts of the world. Over the course of these travels the organization has delivered and equipped over 1.43 million people with hearing aids, opening up the world to people who otherwise were forced to live in complete silence. Countless lives have been changed by the organization and Dr. Robert Dean has felt privileged to participate with on the ground activities.

Despite its celebrity appeal, The Starkey Hearing Foundation has taken a realistic and community-based approach to hearing. As part of its model, the foundation works with local and regional leadership in the community and has been striving to empower local residents to take ownership of their own local hearing health services. The team then approaches each situation in a three-phase model that has worked effectively in over one hundred countries across the globe. First patients are identified, then the patients are fitted with custom made ear molds and taught how to care for and operate their hearing aids, and finally the foundation provides after care services to patients. The aftercare is an ongoing support system that remains in place at a central location, giving patients access to information, batteries, and repair services.

This July, the foundation once again hopes to highlight the contribution of those who make a difference in the world. Previous honorees have included President Bill Clinton, Sir Richard Branson, Ashton Kutcher, and Mohammed Ali. Dr. Robert Dean will be attending the event and this year’s gala promises to have a host of deserving people, who for a moment are given the spotlight of a grateful world.

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Dr. Robert Dean and the Friedreich’s Ataxia Research Alliance (FARA)

08th Jul 2014 Diseases, Friedreich's Ataxia

Dr. Robert Dean is actively involved with the Friedreich’s Ataxia Research Alliance (FARA) and working with them on ways to help find a cure. Friedreich’s Ataxia (FA) is a condition that causes damage to the nervous system. It will often start in childhood and worsen over time until it begins to impair movement. The disease impacts around 1 in every 50,000 people within the U.S. Unfortunately, the disease did not get very much attention, funding, or research until FARA was founded. The organization has led the awareness and research efforts since 1998 and continues to do so today.

What are the symptoms of Friedreich’s Ataxia?

The disease impacts people in different ways but generally speaking the symptoms will start to occur between the ages of five and fifteen. It typically starts by making it difficult for people to walk with the Ataxia spreading into the arms and core. Some patients will also lose their tendon reflexes and suffer from scoliosis. As time goes on patients may start to have their speech slur and develop hearing and vision loss, as well.

In addition to making large impacts on their ability to move, patients find it difficult to recover from common illnesses like colds and the flu. They become fatigues more easily and frequently suffer from chest pain, shortness of breath, and heart palpitations, common symptoms that result for accompanying heart disease.

Once the symptoms have started manifesting most patients only have ten to twenty years before they are confined to a wheelchair and eventually become incapacitated. This is incredibly devastating considering that most people start to suffer from Friedreich’s Ataxia when they are small children. By the time they are teenagers they could be permanently confined to a wheelchair.

How FARA Helps Patients

FARA was established in 1998 by a dedicated group of scientist and patient families that were determined to learn everything they could about the disease, what causes it and how to cure it. Their efforts have been successful in that millions of dollars have been poured into FA research and clinical trials throughout the world. With drugs in clinical trials, FARA continues to work on funding and creating public, private partnerships to further research and development.

Dr. Robert Dean and FARA

When Dr. Robert Dean became aware of Friedreich’s Ataxia, he was moved beyond measure. Witnessing small children suffer from an incurable genetic disease was something he could not stand by and watch. Listening to patients tell stories of heartbreak and learning to overcome their condition was inspirational and motivating. When children and young adults can be so confident in the face of a debilitating disease it brings what needs to be done into focus and Dr. Dean had to get involved. He has since been focused on bringing awareness to the disease, FARA, and the patients that are impacted by it. Through participation in various programs and fundraising activities, Dr. Robert Dean continues to push forward and partner with FARA to find a cure for those that need it most.

He invites you to join him in these efforts by learning more about FARA, volunteering, or donating so that those suffering from the disease can lead longer and fuller lives. To contact Dr. Dean, email contact@doctorrobertdean.com.

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