#alzforum

[katemulgrew]

#Repost @alzmanh ・・・ What an amazing second day of the 2019 #ALZForum! We are ready to turn #CapitolHill #purple and make our voices heard! 💜 https://www.instagram.com/p/BvwAut3hyHF/?utm_source=ig_tumblr_share&igshid=mvs1h85c90ti

[christineelectra]

As I board my plane home from the #AlzForum, I can't help but reflect upon what an honor and a privilege it is to have represented Tennessee at our nation's Capitol. It's such an incredible opportunity to have a way to impact real, measurable change and to actually change the world. I'll be posting more on my blog soon about my experiences at this year's forum. Thank you for all of your thoughts, prayers, and encouragement. It's an honor to fight for my family, and also for yours. And I won't stop until Alzheimer's isn't a reality anymore. (Thank you all for al the love and support! I'm so grateful to have so many people pushing me to be my best and to fight for change and I'm tearing up just thinking about what an HONOR it is to be here on your behalf. You have my sincerest appreciation and gratitude for your kindness. Thank you thank you thank you) (at Capitol Hill)

[christineelectra]

Attending the National Alzheimer's Dinner at #AlzForum in this stunning @macduggal from @joannsofunioncity with @jimballdesigns to accessorize! Thank you Paige Dennis and Austin Pettis for making me my best! #ENDALZ #MissScenicCity (at Marriott Wardman Park)

[christineelectra]

Checked in, purple on, and ready for Advocacy training!! I'm so excited to be in D.C. For my third Alzheimer's Advocacy forum! It is such an honor to be here representing Tennessee and the Scenic City at our national gathering. Can't wait for Advocacy training up next and to continue training to lobby our congressional leaders! #MissScenicCity #MissTennessee #MissAmerica #ENDALZ #AlzForum (at Marriott Wardman Park)

[endalz]

To Congress: It’s time for you to be bold

“I need you to be bold.”

Barb Cole emphasized this powerful statement to a staff member of Senator Warner during our meeting at the Alzheimer’s Advocacy Forum. Barb was diagnosed with early-onset Alzheimer’s at the age of 53.[1] If she didn’t tell you that she had Alzheimer’s, you would have never known.

Senator Warner is perhaps one of the best supporters of Alzheimer’s disease in the Senate, but we need even the best supporters to be bold to get Congress on board with the necessary increase in funding.

I could feel the difference on Capitol Hill in 2016 compared to my first time advocating for Alzheimer’s in 2012. At the time, the political climate was not good for increasing funding for research. With the sequester looming, Senator Warner warned that it would be difficult to increase funding for anything. In FY2012, federal funding for Alzheimer’s was about $500 million.

Last year was a historic year for Alzheimer’s research, with an increase of $350 million to make a total of $991 million per year. Without the efforts of advocates, this increase would not have been achieved. Despite this increase, federal spending is still less than half of $2 billion, which is the number that scientists say is needed to develop a treatment and potentially a cure by the year 2025. This year, advocates are pushing for an additional $400 million to get closer to the goal of $2 billion.

During my meeting with staff members, I gave an example of how NIH funding pays off. Researchers from the UVA’s Brain Immunology and Glia (BIG) Center discovered lymphatic vessels that, contrary to prior belief, provide a direct connection between the brain and the immune system.[2]

Dr. Jonathan Kipnis, whose lab discovered the vessels, believes this discovery could have implications in Alzheimer’s and almost every other neurological disorder. “In Alzheimer’s, there are accumulations of protein chunks in the brain. We think they may be accumulating in the brain because they’re not being efficiently removed by these vessels.”[3]

Dr. Antoine Louveau, the postdoctoral fellow who made the initial discovery, says the next step is to understand the function of these vessels in brain physiology and in neurological diseases. I asked Dr. Louveau what is holding them back from achieving these goals. His answer won’t surprise you.

“I don’t know if something is holding us back; but time and money are, to me, always the limiting factors in science. With the meningeal lymphatic system being a new discovery, we need to develop the tools that could help us understand and study their function, and this requires time and investment to achieve this goal.”

Just last week, a study by Dr. Beth Stevens from Boston Children’s Hospital was released that suggested Alzheimer’s may be the result of an inappropriate immune response.

Emily Underwood from Science writes, “Dr. Stevens has spent much of her career studying a normal immune mechanism that prunes weak or unnecessary synapses as the brain matures from the womb through adolescence, allowing more important connections to become stronger. Stevens hypothesized that the same mechanism goes awry in early Alzheimer’s disease, leading to the destruction of good synapses and ultimately to cognitive impairment.”[4]

The discoveries are groundbreaking and the researchers are ready to ramp up their efforts. Now it comes down to Congress to listen to the experts and adequately fund projects so treatments can be developed by the year 2025. If Congress needs an example of how an increase in research leads to meaningful outcomes, they just need to look at HIV.

“Human immunodeficiency virus (HIV) infection and the acquired immunodeficiency syndrome (AIDS) have shown an almost unique linkage between biomedical research and improved healthcare outcomes. A transformation has been seen between 1981 when AIDS was a rapidly fatal condition, to the present dramatic survival prolongation. HIV infection is a chronic illness requiring ongoing modern therapy.”[5]

I don’t want to hear how it depends on Appropriations, even though I know it’s a politician’s reality. I want to see more than just tweets of Senators and Representatives talking about how they support an increase in funding. I want them to be bold and convince their colleagues who don’t support this increase to change their minds.

 We need them to be bold. Ask your elected officials to act now:

https://act.alz.org/site/Advocacy?cmd=display&page=UserAction&id=1295

 Alzheimer’s advocates from Virginia outside of Senator Warner’s office. 

 [1] http://richmondfamilymagazine.com/article/alzheimers-association/

[2] https://news.virginia.edu/illimitable/discovery/theyll-have-rewrite-textbooks

[3] https://news.virginia.edu/illimitable/discovery/theyll-have-rewrite-textbooks

[4] http://www.sciencemag.org/news/2016/03/over-pruning-synapses-may-drive-early-stage-alzheimer-s-disease

[5] http://m.annonc.oxfordjournals.org/content/22/Suppl_7/vii50.long?view=long&pmid=22039146