Wednesday, September 30, 2020

RECIPE : ADVOCATING TO YOUR LEGISLATOR BY ROBERTA REED

Recipe: Advocating to Your Legislator

Preparation Time: Approximately one-hour initial setup

Longevity: Periodic weekly interaction

Outcome: Legislator adoption of “ASK”

Ingredients for advocacy to your legislator

• Do Your Homework:

• Engagement Opportunities:

• Resources:

• Establish and Use Relationships:

• Don’t Give Up—Repeat as Needed

Directions:

Do Your Homework:

1. Identify who your elected officials are. Do this for both Federal and State representatives. Once identified, research what their “Story” is. For example: What committees are they on? Do they favor military? What legislation have they introduced? Or do they favor/promote certain types of legislation? If your legislator is newly elected, find out what legislation his/her predecessor supported relative to kidney disease. What are other legislators within your state doing to support chronic kidney disease issues? Does legislator or a member of the staff have a relationship to kidney disease or chronic illness? What is their educational and employment background? What are their religious beliefs?

2. Think about “Your Story”. How does it relate or tie into your legislator? Pick some examples from your story that would have different outcomes by having your legislator’s engagement. How many chronic kidney disease patients in your state are being impacted by kidney disease? What is the cost of treating your kidney disease? How can these costs be impacted or transitioned into savings for our government and taxpayers?

3. Make a list. Pick three things you want to ask of your legislator. These “asks” should have a tie to your personal story. By making it personal, you make it real.

Engagement Opportunities:

1. Legislator’s local district office—Record the address, telephone number, email addresses and district office personnel who manage the office. Identify the scheduler who will help in scheduling an appointment to meet and keep you informed of in district events.

2. Legislator’s Washington, DC office and State legislator’s state capitol office address, telephone number and names of aides who manage office and handle legislative issues. Record the contact information including email addresses.

3. Town Hall Meetings—Ask the district office personnel when and where your legislator will hold a Town Hall Meeting? Find out what is required for attending a meeting? Do you have to register to speak or ask a question at the meeting?

4. Check out your local Chamber of Commerce. Give the chamber office a call and ask them if they host or invite state and federal legislators to speak to local business owners? Ask how you can attend upcoming events?

5. Ask the district office personnel what specific engagement opportunities your legislator has planned? For example: Mobile Office Hours in your part of the district, Satellite office opening events and hours, Coffee with your legislator events, Local business visits your legislator plans to attend.

Resources:

1. Use your local National Kidney Foundation office. Invite them to go with you to legislative meetings and events. They have the statistics readily available on the impact of kidney disease locally. The local NKF office staff will help engage your legislator by inviting them to NKF events. It can be stressed to your legislator as a benefit to better engage with his/her constituents. The local NKF office is your support backup in meeting and dealing with your legislators.

2. Social Media—Friend your legislators on Facebook, Follow your legislators on Twitter, Join your legislator network on LinkedIn, Follow your legislator on Instagram. Massive amounts of information can be derived from social media and done so much faster than waiting for an in-person meeting. You will find legislators pay staff to exclusively monitor and post to the various social media platforms as a means of communicating with their constituents. Your personal social media can be used as well to communicate to legislators by tagging them in your posts.

3. The Legislator Newsletter—Go to the legislator’s website and signup for their newsletter. This is easy and it will keep you informed on what they are doing for their constituents. It will also tell you about upcoming events and opportunities you have for engaging one on one with your legislator.

4. National Kidney Foundations Website Advocacy Resources—Use what is available to you. You will find state statistics, important asks and positions the NKF has on legislation—both pending and issues for which we are advocating, letters that are pre-written for constituents to send to their legislators, guides to successful advocacy, links to find out who your representatives are and how to reach them. (All organizations have websites with limitless resources for you to tap)

5. Basecamp—Learn what your fellow advocates are doing. Get fresh ideas from them on what has worked for them. If they have gotten positive results from what they did, you likely will too, so use this resource to better your advocacy efforts. (This platform is most familiar to the Kidney Advocacy Committee members, but all other organizations have similar resources for rallying their advocates)

Establish and Use Relationships:

1. National Kidney Foundation Legislative Staff—If you have a question on how to do something or need clarification on the NKF position for legislation, email or call Andrew Fullerton. Why reinvent the wheel when you have one already turning right there in Washington, DC? If you are unsure about how to get your point across, ask. (The NKF is used as an example, but the same approach should and is applicable to all organizations you represent. IE: AAKP, AKF, PCORI etc.)

2. Legislative Staff—Let’s face it, your legislators are busy people. They hire staff and aides to collect, sort, and relay information to them. These are the “gatekeepers” as we know them in sales. Your objective is to get past the gatekeeper and if you can’t, the next best thing is to get the gatekeeper’s ear. The aides have a responsibility to report back to their boss on what is happening in the legislator’s district and what the pulse is with their constituents. You need to establish a relationship with the staff.

3. The “Thank You”—Anytime you have an interaction with a legislator or staff member, you MUST thank them. A thank you goes a long way by serving several purposes through recognizing the time and effort that was put forth on your behalf, gives you the opportunity to review the positions you discussed during your interaction, and leaves the door open for future engagements. The Thank You should be made on every platform—hand written note, social media (Facebook, Twitter, LinkedIn, Instagram), use pictures to capture the attention of the reader, in person—perhaps at a future event you attend where you publicly acknowledge the legislator in front of other constituents.

4. Social Media—Let your friends do the work for you. Use your “Friends” list and send private messages. You can ask your friends to support issues and send messages to their legislators. For example: I wanted to gain the support of my legislator for the LPDA in the form of co-sponsorship. I sent via private message, the link from the NKF resource page that in just one-click sent a message to my representatives asking for them to support the legislation. My goal was to fill the legislators email box with multiple letters of support from their constituents. Also, when you post to social media, invite your friends to LIKE, COMMENT, and SHARE your post. Be sure to tag every post with the legislator name and use the tags provided to us from the NKF. Make sure you use at least one picture with every post. Pictures capture the audience attention and remember, “pictures speak a thousand words”.

5. The local National Kidney Foundation Staff—As mentioned above, the local office of the NKF is a resource, but the relationship established through using this resource is vital. You will find opportunities for advocacy coming to you, rather than you having to seek them out if you have a relationship with the local NKF office staff. In the sales environment, I didn’t make my money on the initial sale, I made it on repeat business and word of mouth referrals. The concept is the same here in working with the local office. Your initial contact is the hardest part—once that relationship is established, your rewards through interactions with the NKF staff will be multiplied.

Don’t Give Up—Repeat as Needed:

1. You can’t do everything at once. Stagger your list. Keep a calendar as your schedule. Not only will you be more impactful in delivery of your message, you will also avoid burnout. In the old days, we use to get ads and coupons delivered to our mailbox. Companies and advertisers believed the more often they got their message out, the more likely we as consumers would be to buy. Same concept here folks—the more often we get the ear of our legislators, the more likely they will be to support our ask.

2. If at first you don’t succeed, try, try again. When you run out of idea’s, call someone from the organization you are advocating for (NKF, AAKP, AKF). Ask for some encouragement and new approaches to tackle.

3. Lastly, write it down and keep a record of what works and what doesn’t. This will help you down the road when tackling your next advocacy effort. Having this foundational information will make you a more successful advocate.

Saturday, September 26, 2020

Interview with Payal Shah

https://www.facebook.com/UrbanHealthOutreachmedia/videos/266541994437809/

Sunday, September 6, 2020

PKD AWARENESS DAY 2020 AAKP VERSION

PKD Awareness Day 2020

By Jim Myers, AAKP BOD/Ambassador

How does one normally become aware of Polycystic Kidney Disease? In my case, I became aware through my Father. I’m 62 now. This is about the same age my Dad was when he first told me he had PKD. He had been to the Mayo Clinic for a checkup, and he reported to me that he had “kidney disease.” He went on, “let me put it this way, the doctors said I won’t live to be a hundred.”

In the years that followed he became dizzy, had difficulty standing and maintaining his balance. In a very short time, he was on dialysis. By 1983, he was gone. He spent the last month of his life in the hospital, St. Margaret’s in Hammond, Indiana. He died a slow, lingering death of congestive heart failure and uremic poisoning all secondary to PKD. I learned that as a child, his entire family had been quarantined as a result of small pox, and almost all of my family on my Father’s side had died as a result of what was originally termed as “environmental PKD,” or due to a scarring of the kidneys that later turned into cysts and infection.

One thing about this, I had a cousin Rich, who did not live with this group, and he too died from PKD related causes. He was in his 30’s when he died, he had just married and this came as quite a shock to the rest of us. They termed this, “Childhood PKD” and told the rest of us it was an aberration.

When my Dad told of us diagnosis, I was in law school, when he died I was already working my second attorney job. Very shortly after his death, I went into the hospital in Valparaiso, Indiana, what was then called Porter Memorial, with chest pains. My PCP told me that my cysts were so large they could be seen on a plain x-ray. So much for the environmental/childhood theories. To say this came as a blow, was an understatement. I watch my Dad die and I felt my future was cast in cement.

I did a lot of things wrong after that, but more importantly were the things I did that were right. I not had the local nephrologists my Dad had in NW Indiana, but also retained nephrologists at IU Health at Indiana University. I was put on a renal diet right way. I was given high blood pressure medication. I saw them every six months, where they did a urine test and a blood test on every visit. I was able to put dialysis for a long time, over 30 years. I was horribly frightened of dialysis because of what I saw when I sat with my Dad. But because I had followed medical advice and had excellent care, my dialysis was not unreasonably difficult.

Others were not so lucky. I became a kidney advocate and this is what I plan to do the rest of my life. I like helping others , especially my friends with PKD!

On April 27, 2016, I became the first Myers ever to have a kidney transplant at my lucky place, IU Health in Indianapolis.

For PKD Awareness Day, I want to remind everyone to get tested. It is a simple and inexpensive blood and urine test that takes no time at all, but can make a world of difference. If PKD runs in your family, like mine, don’t hesitate to get checked out. Be PKD aware!

https://aakp.org/pkd-awareness-day-2020/

Thursday, September 3, 2020

PKD AWARENESS DAY 2020

Home Guest Blogger

PKD AWARENESS STORY

The Hope

September 3, 2020

Written By: James Myers

PKD AWARENESS DAY 2020

How does one normally become aware of Polycystic Kidney Disease (PKD)?

In my case, I became aware through my Father.

I’m 62 now, which is about the same age my Dad was when he first told me he had PKD.

He had been to the Mayo Clinic for a checkup, and he reported to me that he had “kidney disease.” He went on, “let me put it this way, the doctors said I won’t live to be a hundred.”

In the years that followed he became dizzy, had difficulty standing and maintaining his balance. In a very short time, he was on dialysis. By 1983, he was gone.

He spent the last month of his life in the hospital, St. Margaret’s in Hammond, Indiana. He died a slow, lingering death of congestive heart failure and uremic poisoning all secondary to PKD.

I learned that as a child, his entire family had been quarantined as a result of small pox, and almost all of my family on my Father’s side had died as a result of what was originally termed as “environmental PKD,” or due to a scarring of the kidneys that later turned into cysts and infection.

One thing about this, I had a cousin Rich, who did not live with this group, and he too died from PKD related causes.

He was in his 30’s when he died, he had just married and this came as quite a shock to the rest of us. They termed this, “Childhood PKD” and told the rest of us it was an aberration.

I was in law school, when my Dad told of us of his diagnosis, and when he died I was already working my second attorney job.

Very shortly after his death, I went into the hospital in Valparaiso, Indiana, what was then called Porter Memorial, with chest pains. My PCP told me that my cysts were so large they could be seen on a plain x-ray.

So much for the environmental/childhood theories.

To say this came as a blow, was an understatement. I watched my Dad die and I felt my future was cast in cement.

Jim Myers holding a photo of his father who passed away from PKD complications

I did a lot of things wrong after that, but more importantly were the things I did that were right.

I not had the local nephrologists my Dad had in NW Indiana, but also retained nephrologists at IU Health at Indiana University.

I was put on a renal diet right way.

I was given high blood pressure medication.

I saw them every six months, where they did a urine test and a blood test on every visit.

I was able to put dialysis for a long time, over 30 years. I was horribly frightened of dialysis because of what I saw when I sat with my Dad. But because I had followed medical advice and had excellent care, my dialysis was not unreasonably difficult.

Others were not so lucky. I became a kidney advocate and this is what I plan to do the rest of my life. I like helping others , especially my friends with PKD!

On April 27, 2016, I became the first Myers ever to have a kidney transplant at my lucky place, IU Health in Indianapolis.

For PKD Awareness Day, I want to remind everyone to get tested. It is a simple and inexpensive blood and urine test that takes no time at all, but can make a world of difference. If PKD runs in your family, like mine, don’t hesitate to get checked out. Be PKD aware!

Read Jim’s full advocacy story Here