Tombolo

Forgiveness

Nora — Tue, 28 Sep 2010 13:34:34 +0000

‎”It’s simple: When you haven’t forgiven those who’ve hurt you, you turn your back against the future. When you do forgive, you start walking forward.” by Tyler Perry, director. Posted of Facebook this morning by Charles K Poole

This quote made me stop and reflect when I read it this morning because it’s something that comes up a lot in the rare disease and chronic illness communities. While fighting four your children and families, people who are (or aren’t) well intentioned can sometimes give hurtful advice. Or we are feeling alone and isolate and people around us are focused on things that seem to trivial compared the the lives of our children. We need a hug and we don’t get one. We are told that we are making the ‘wrong’ choices from people who don’t really know what they are talking about. This list could go on and on….

Sometimes. Maybe oftentimes. It’s also ourselves that we need to forgive.

When you are feeling vulnerable the hurt seems to go so deep and forgiveness can sem impossible. Forgiveness takes energy and at times there just isn’t enough to go around! But I have found that I need to be in place of forgiveness to be truly present and loving with our children and family.

What is your experience?

There’s a place for you at the BigTent Conference!

Murphy Family — Tue, 21 Sep 2010 20:10:36 +0000

Full Disclosure: In addition to my work with Tombolo, I am working with Search Institute at the Youth Engagement Manager for the BigTent Conference.

Do you know about the BigTent Conference? Join colleagues from all youth-serving professions for three days of sharing strategies and tools to advance the health and well-being of children and youth. You’ll have access to 150+ practical workshops with leading experts on college readiness, 21st century learning, risk behaviors, positive staff and youth climate, juvenile justice, adolescent mental health, parent engagement, and more.

Why have I chosen to work on this project? (Besides the fact that my work with Tombolo is unpaid!) Because they BigTent has the same goals we have at Tombolo! Honoring diverse voices, collaboration and supporting families. Through my work on the conference and the four days I will spend in Houston, I hope to make some fantastic connections with people who will help us better serve families. I hope it will stretch my mind and help me think about how we can improve our services. I hope to have ideas for tangible ways that we can better engage youth in Tombolo’s operations.

Much of the language I have heard around Search Institute talks about the BigTent more as a conversation than a conference. Do you want to join the conversation? I’d love to see you there!

Visit www.bigtentconference.com to learn more or register now.

fall 2010 opportunities with Tombolo

Murphy Family — Tue, 14 Sep 2010 10:00:37 +0000

Are you passionate about supporting children with ongoing health care needs and their families? We definitely are and have new ways for you to get involved with Tombolo!

Circle of Care Volunteer (click here for more info)

Circle of Care volunteers who satisfactorily complete a 10-hour training session and pass a state and federal background check are matched with families who have a child with an ongoing health condition and who need extra support. Circle of Care volunteers participate in a wide range of services including companionship, providing respite care for family members or care givers, connecting families to resources and helping them implement an outreach plan to their support network. These volunteers provide a critical support to families by meeting with at least one family, 3-4 times a month for a minimum of 2-hours.

Social Media and Marketing Internship (click here for more info)

The Social Media and Marketing Intern is responsible for maintaining an active presence of a wide variety of social media platforms such as Facebook Pages, Facebook Causes, Twitter, Linked-In, Change.org, Flickr, YouTube, etc. The intern will helping us build upon our existing social media outreach and engagement strategy. This person will also help staff design and implement a marketing strategy in the Twin Cities to increase local awareness of Tombolo among families, medical professionals, potential volunteers & potential community partnerships. This unpaid internship requires a commitment of 5-10 hours per week with most of the work done on your own time at the location of your choice!

Development Internship (click here for more info)

The development intern is primarily responsible for working alongside the Executive Director and other Board Members to locate local and national funding opportunities; write grant proposals to foundations and corporations; organize drives for individual donations; and design additional creative fundraising opportunities. This unpaid internship requires a commitment of 5-10 hours per week with most of the work done on your own time at the location of your choice!

Tombolo’s Board Retreat

Nora — Mon, 13 Sep 2010 09:00:43 +0000

We are lucky to have such a dedicated Board at Tombolo. In addition to full Board meetings, each person serves on at least one committee, helps with out reach, visioning, proofreading and more. We recently had a ‘retreat’ focused in fundraising. See some of our fearless leaders below!

Upcoming Event: Leadership Essentials in the Era of Health Reform

Murphy Family — Sun, 12 Sep 2010 13:56:35 +0000

This event is not hosted by Tombolo or related to Tombolo in any way. But we think its worthwhile to highlight community events that are of interest to the people we work with. People have a wide range of feelings about health reform but regardless of your feelings, there is no denying that things are changing. And as laws, policies and procedures change, so must we. Hopefully we can embrace these changes as an opportunity.

Description:

With more than 30 years of health care management experience, George Halvorson is uniquely positioned to discuss leadership skills that will be required as historic federal health reform legislation is implemented.

Halvorson is chairman and CEO of Kaiser Foundation Health Plan, Inc. and Kaiser Foundation Hospitals, the nation’s largest nonprofit health plan and hospital system. He is the former president and CEO of Minnesota-based HealthPartners, an international expert on health reform, and author of several books on the subject. His keynote address is titled “Health Reform: Where Do We Go From Here?”

Attendees will gain an understanding of national and local implications of recently passed national health reform legislation and how various aspects of the legislation will be implemented in Minnesota. In addition, participants will learn what specific leadership qualities are important to possess during periods of change.

Start:

11/05/2010

End:

11/05/2010

Location:

Coffman Memorial Union Theater

Multiple locations:

No

Registration Deadline:

11/04/2010

Cost:

No Cost

Audience:

public health professionals

Web site: http://www.sph.umn.edu/ce/roundtable/

Messages to Live by For Caregivers

Murphy Family — Fri, 03 Sep 2010 20:00:40 +0000

I just joined NFCA, (the National Family Caregivers Association), an organization dedicated to educating, supporting, empowering and speaking up for the more than 65 million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. The membership was free and the website seems to have a lot of useful resources. I’ll pass them along as I discover them! I really liked a page titled ‘Messaged to Live by‘ which shared the following advice’:

Becoming a family caregiver for someone you love is one of those heart wrenching and at times enlightening life lessons. Your role as a family caregiver can happen abruptly or creep in slowly-unnoticed until one day you realize you are caring more for someone else than you are for yourself.

You find yourself beginning to struggle with the day to day demands and somewhere along the way you realize you have lost your identity and have allowed the caregiving role to define who you are. Your new role as a family caregiver can become as frightening as the initial diagnosis. The journey can be a difficult when traveled alone; however, it does not have to be that hard and you do not and should not have to travel the road alone.

Believe in Yourself: NFCA stresses the importance of trying to maintain a positive attitude by recognizing your strengths and limitations. By believing in yourself and recognizing your strengths and limitations it will go a long way in your ability to set goals and boundaries for yourself and for your loved one.

Protect Your Health: It is critically important to maintain your physical and emotional health and well being – if you don’t who will? Your good health is the greatest gift you can give your loved one and your entire family.

Reach Out For Help: Reaching out and asking for help is never a sign of weakness rather it demonstrates strength and a keen awareness of your own abilities and sense of self.

Speak up for your Rights: NFCA encourages and stresses the importance of arming yourself with vital information regarding your loved one’s diagnosis and treatment options. Having the proper information is the gold standard in achieving the ability to advocate for your loved one and developing strong self advocacy skills. By keeping the goal of receiving quality healthcare and making it a priority, you can avoid future medical problems and create a superior quality of life for all involved.

Do you have any favorite resources for caregivers? If so, let us know about them!

nora

Passionate detachment

Nora — Wed, 01 Sep 2010 15:07:39 +0000

One of the blogs I follow is WorkingWise.com, written by Craig DeLarge. Today he wrote about passionate detachment which he described as

an approach to life, indeed work, which focuses on “right execution” of the process more than the outcome. One learns to enjoy the journey confident that the journey, pursued with the right spirit, will get us to the right destination, even when that destination is different than what we had originally envisioned at the outset.

I did a google search to read more about what other people have written about passionate detachment and found that it has been written about in both the health and education fields. If you follow the RareDiseaseSupport.com blog, you might remember that I have written about the extensive similarities between the fields of health care and education. I found this education article interesting: Teaching at Its Best: A Passionate Detachment in the Classroom. The author, Paul Gardner, traces this approach back to Nietzsche and writes

The “passionate detachment” I mentioned in the title of this essay is not an oxymoron. I am passionate about the discipline of detachment, both my own and my students’, because I believe that only by putting aside ones’ own convictions can one be open to learning what others have to say about a subject matter. And it is only through understanding the ideas of others that people gain a more complete understanding of a subject.

Interesting. And if I think about all of the political discussions I have had since Obama hit the scene it seems to resonate with my experiences.

Passionate detachment is a technique that has been hard for me to learn. I tend to have the ‘gut-wrenching-tied-into-my-self-identity’ kind of passion. But without having a name for it, I think I have realized that I can still be passionate, but much more effective, if I can find a way to be more detached. The alternative for me seems to be burnout.

What do you think about passionate detachment? Does it resonate with you? Why or why not?

nora

Murphy Family — Tue, 31 Aug 2010 09:00:58 +0000

Do you ever leave the Doctor’s office feeling like you weren’t listened to? There are a whole host of reasons this might be true, with some of the ‘blame’ to be placed on us, some on the physicians, some on training, some on nightmarish scheduling… but passing blame around doesn’t help us change the fact that 4 in 5 people who presented with simple asthma symptoms were not treated correctly in a recent study published in the Annals of Internal Medicine. Watch the video below:

What do you do to make sure you are one of patients who gets the right treatment? I know for me it has included changing doctors to find the right one in a setting that allows for conversations, and arming myself with documentation. I try to be assertive but not aggressive. Sometimes this means leaving me comfort zone but the more I do this, the better our care is getting.

Read more about the study here in the Huffington Post or here to read the original.

Vote 4 Hope

Murphy Family — Mon, 30 Aug 2010 15:46:18 +0000

The Global Genes Project (GGP) team has been busy getting ready for the big Pepsi Challenge September vote. They have nearly 30 different kids who will share their stories and precious photos over the Month of September. Ayrie, 4 year old son of Tombolo’s Executive Director will be one of the featured children! We’ll post a link so you can all visit Ayrie in the ‘Vote 4 Hope’ page and vote!

Money raised through Pepsi Refresh Project voting contest will help build a funding platform to speed-up rare disease research by easily connecting rare disease groups and foundations with financial supporters. Funding for rare disease research is critical because as one researcher said, “The good thing is that few people will get this disease. The bad thing is that few people will get this disease.” And he meant that as a researcher, it is incredibly hard to get money and other resources to study a disease that is so rare. And as we believe at Tombolo, we are all connected through the people that we love and care about. One child with a rare disease is connected to and important to all of us.

The Global Genes Project (GGP) team is also collecting “Hope” inspired artwork, and would love to include you on this website, on Facebook and the like. You can find GGP on Facebook (here) and on Twitter (here) and (here).

Transitions

Murphy Family — Sun, 29 Aug 2010 10:04:04 +0000

Life is full of expected and unexpected transitions. Children change schools and adults change jobs. People grow and develop. Families move. But the diagnosis of a rare disease or chronic illness is often unexpected and adds a new layer of transitions to your life. Transitions in health status and disease state. Transitions in the roles people need to fulfill within the family. Changes in your sense of security or your expectations for the future.

All of us who have lived in families- regardless of our race, gender, family size, religion or economic status- know that successful, healthy, evolving families take hard work. And times of transition can be some of the hardest times for individuals and families. New routines, new roles, new people to explain to. New reminders that perhaps your life is not the one you thought you’d have.

Families who have children with chronic illnesses or other ongoing health conditions might have received the diagnosis before the child or sibling was born, at birth, or many years later. Regardless of the time, family members likely experienced a wide range of emotions. Perhaps they felt shock, denial, anxiety or depression. Perhaps a startling loss of control or need for certainty. Perhaps they felt alone. Angry. The need to know, “why him?” “why her?” “why me” “why us?”

There is nothing wrong with any of these feelings. But the reality is that family members may need to play the dual role of grieving parent/child/sibling while simultaneously providing strength and support to others. They will likely find that they need to reach out to family, friends, a therapist or another person to help you tap into your resilience and inner strength and manage the intensity of your emotions.

They might find support in Tombolo.

Start:	11/05/2010
End:	11/05/2010
Location:	Coffman Memorial Union Theater
Multiple locations:	No
Registration Deadline:	11/04/2010
Cost:	No Cost
Audience:	public health professionals

Tombolo

Forgiveness

There’s a place for you at the BigTent Conference!

fall 2010 opportunities with Tombolo

Circle of Care Volunteer (click here for more info)

Social Media and Marketing Internship (click here for more info)

Development Internship (click here for more info)

Tombolo’s Board Retreat

Upcoming Event: Leadership Essentials in the Era of Health Reform

Start: 11/05/2010 End: 11/05/2010 Location: Coffman Memorial Union Theater Multiple locations: No Registration Deadline: 11/04/2010 Cost: No Cost Audience: public health professionals

Start:

11/05/2010

End:

11/05/2010

Location:

Coffman Memorial Union Theater

Multiple locations:

No

Registration Deadline:

11/04/2010

Cost:

No Cost