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Please vote in favor of this legislation. So many folks, just in this county alone have been diagnosed positive for Alpha Gal. Listing it as a reportable disease is a next step toward greater understanding and acceptance of the syndrome, therefore one step closer to consideration for greater research for prevention and treatment.

As a Virginia resident who has suffered from Alpha-gal syndrome (AGS) for over 24 years, I would like to register my strong support for HB 93 and urge its passage in the General Assembly. AGS is a tick-borne disease that causes a serious allergy to a sugar in mammal meat and mammal products (including many medicines). AGS is spread through the bite of a lone star tick. Shortly after moving to VA, where I immediately fell in love with hiking in the Shenandoah Mountains, I began to suffer unexplained bouts of severe hives. Allergists had no answers. Next came episodes of severe gastrointestinal distress and mysterious drops of blood pressure that send me to the ER. Eventually, the reactions got worse and I ended up taking my first ambulance ride to the ER in the middle of the night, in and out of consciousness from anaphylaxis. Eight years after my first reaction, I finally had a tentative diagnosis. Testing would eventually show that I was severely allergic to mammal meat. Several years later, after another very scary and cold January ride in an ambulance to the ER, I discovered I could also not tolerate dairy due to AGS. Navigating menus and ingredient lists is a constant battle, but my worst fear is being in an accident, ending up in the ER unconscious, and being administered one of many drugs that are made with mammal ingredients. A single dose of heparin, a very common blood thinner, could put me into severe anaphylaxis or even kill me. Thankfully, I am not as sensitive to minor amounts of mammal as some in the AGS patient community who suffer reactions even to the fumes of cooking mammal. I tell you all of this to emphasize that AGS is a life-altering, and even life-threatening, condition. As not just an allergy, but also a tick-borne disease, targeted public health education in hot spot areas can help prevent the disease from spreading. The Centers for Disease Control, which is encouraging states to report, has stated that “the prevalence of this condition is largely unknown.” They describe “a critical need” for “improved surveillance to aid public health decision-making.” This is especially important in Virginia. If surveillance is not improved, it will be hard to justify additional federal resources, even though VA is an AGS hot spot. Currently, most federal tick-borne disease funding is dedicated to preventing Lyme disease. However, 95% of tick encounters in VA involve lone star ticks – ticks not thought by the CDC to carry Lyme. Therefore, determining the true prevalence of AGS in VA could be key to increasing the allocation of resources, not just for healthcare provider education on AGS, but also for public health outreach related to tick bite prevention in general. Out of the 6 ER visits I have had with AGS reactions, only once did the doctor have a working understanding of AGS. Increased healthcare provider education might mean that my medic alert bracelet would be enough to save me (and many other Virginians with AGS) if I were admitted to the hospital in an emergency. A better understanding of the prevalence of the disease could also ensure Virginians are diagnosed sooner, something that might help save their lives. Finally, it would be an enormous public benefit if we could prevent more people from getting AGS in the first place by targeting resources to public education on tick bite avoidance. HB93 is an important public health measure for Virginia, and I urge you to vote yes.

As Cofounders of Two Alpha Gals, we have been helping others navigate the complexities of living with alpha-gal syndrome (AGS) since 2019, and we strongly support HB93. In addition to living with AGS ourselves, we have unique insight into the direct impact of the condition on the community through our mentorship program. A primary cause of concern for patients living with AGS is lack of knowledge among healthcare providers. In July 2023, the CDC reported that in a nationwide survey of healthcare providers, 42% were unaware of AGS, and another 35% were not confident in their ability to diagnose or manage patients with AGS. The passing of HB93 would provide a vehicle for cohesive and comprehensive education among healthcare providers in Virginia and is a foundational step toward directly improving the wellbeing of Virginians impacted by AGS. Because the number of cases continues to increase, it is critical to pass HB93 in order to determine the immediate effect of AGS on Virginians. Sincerely, Debbie Nichols and Candice Matthis, Two Alpha Gals LLC, www.TwoAlphaGals.com

As a board-certified practicing allergist and immunologist for over 20 years who regularly evaluates alpha-gal allergy patients, I completely disagree with the potential requirement to report alpha-gal allergy to the CDC or state registry. The reporting of medical conditions was started to prevent and control the spread of infectious diseases including poliomyelitis or later determining the source of foodborne illness outbreaks. This reporting was also extended to potential toxic or occupational sources of illnesses. Alpha-gal allergy is delayed reactivity to mammalian meat triggered in some people by tick bites. It is an allergy, not a communicable or infectious disease such as is Lyme disease. I agree that there is low awareness of alpha-gal allergy and more research is needed, but making it reportable is not the best approach. By the logic of the bill’s proponents, we should report every noninfectious disease where there is low awareness. We could also require bee sting or tree nut anaphylaxis to be reported. This would flood the CDC with additional disease reports and dilute the focus on infectious diseases. Reporting alpha-gal syndrome is unnecessary, unhelpful and a waste of public resources. Please do not pass this bill and allow the reporting system to focus on communicable and infectious diseases.

Comments Document

As a Director of the Alpha-gal Syndrome Awareness Campaign--a volunteer effort involving hundreds of people affected by alpha-gal syndrome, including Virginians--and creator of the Alpha-gal Information website--the most comprehensive resource on alpha-gal syndrome (AGS)-- I would like to register my strong support for HB 93. Passage of HB 93 would meet an urgent need for surveillance of alpha-gal syndrome (AGS), an emerging, tick-borne condition characterized by potentially life-threatening allergic reactions to a sugar found in mammals and products derived from mammals. The CDC reports that AGS is a growing clinical and public health concern, and state-level surveillance is a “critical need” to determine its true prevalence and trends in its expansion. This information is vital for public health decision-making. Importantly, passage of HB 93 would also serve as a mechanism to educate the scores of healthcare providers who remain unaware of AGS. Virginia is an AGS hotspot. Over 20% of residents in some areas of the state have the allergic antibodies (IgE) to alpha-gal associated with AGS, and up to 9% of these individuals may have full-blown AGS. A recent study found that more than 2% of a cohort from central Virginia had AGS. Other estimates suggest that up to 3% of people in the hardest hit areas may be affected. The CDC encourages states to report cases of AGS and has laid the groundwork for states to make AGS reporting mandatory. In September 2023 Arkansas became the first state to make AGS a mandatory, reportable health condition. Other states in high prevalence regions are expected to follow suit. By passing HB 93, you can make a lasting impact on the health and well-being of thousands of Virginians. This legislation presents a pathway to document the true prevalence of AGS and monitor its expansion, which is needed to facilitate and fund public health measures addressing this issue. Sincerely, Sharon Forsyth Alpha-gal Syndrome Awareness Campaign https://alphagalinformation.org/

I have Alpha-gal Syndrome. It's an allergy to mammal meats, products, and by-products. It can be life threatening, as reactions can present as anaphylaxis. Please pass HB 93 and make this tick-borne disease reportable to the CDC, so tracking of cases and it's spread can be evidenced. There is very little knowledge of this in the medical community, and resources and research are limited. By putting a quantitative spotlight on Alpha-gal Syndrome we have a better chance, as a state, to build valuable resources, advance medical knowledge, and unite agencies that should be working on this together to mitigate the spread and help those afflicted. Thank you